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Members wishing to use the ACPOPC logo should seek committee permission by contacting the PRO: [email protected]

In Touch

Summer 2011

Number: 83

© ACPOPC Committee

Do not copy content without permission

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Deadline for next newsletter:

31st Aug 2011

Send content to:

[email protected]

DISCLAIMER

Views expressed in this Newsletter are the views of the author and are not necessarily endorsed by the Editor or the Executive Committee. Whilst every care has been taken in the preparation of this Newsletter, no legal responsibility can be accepted

for inaccuracies.

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Contents

The Committee 4

Regional Representatives 5

Reports 6

Report of the Chairperson 6

Regional Reports 7

ACPOPC AGM 10th May 2011 at 09.30, Churchill Hotel, Cardiff 8

Report of the Chairperson 11

Report of the Secretary 11

Report of the Treasurer 12

Report of the Education and Research Officer 13

Member Without Portfolio Report 14

Newsletter Editor Report 2010-2011 15

Report of the Membership Secretary 15

Report of the Public Relations Officer (PRO) 16

Study Day Liaison Officer Report 2010-2011 17

Report from Regional Representative Officer ACPOPC Committee May 2011 18

2010 - 2011 Annual Report of the CIOG Liaison Committee Representative 19

MEMBERSHIP APPLICATION / RENEWAL 2011 20

Bulletin Board 22

Courses 23

CONNECTIVE TISSUE COURSES: 23

Cancer Survivorship 24

Exercise and Lifestyle in Rehabilitation and Cancer Survivorship 25

MSc Clinical Leadership in Cancer, Palliative and End of Life Care 26

Living longer, dying slower 27

Feedback 28

Study Day; West of Scotland Branch of ACPOPC 28

Research 29

Summary of the research on patient self-referral to physiotherapy withinoncology and palliative care undertaken with the ACPOPC membership 2010 29

Articles 33

Exploring rehabilitation for people with 1° CNS Tumours using Ethnography: patients’ perspectives. 33

Features 34

Innovative healthcare project launched to highlight early signs of MSCC 34

Metastatic Spinal Cord Compression 35

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The Committee

Chairperson Jane Rankin

The Belvoir Park Suite

Cancer Centre Belfast City Hospital, HSC Trust Lisburn Road, Belfast, BT9 7AB

Tel: 028 90699430;

Fax: 02890 699459 email: [email protected]

Secretary

Siobhan O'Mahony

Physio. Department Marymount Hospice, St Patrick's Hospital

Wellington Road, Cork Ireland

Tel: 00353 21 4501201 ext 269; Fax: 0035321 501619 email: [email protected]

Membership Secretary Lucie Hughes

Macmillan Rehab Team Princess Royal Community Health Centre Greenhead Road, Huddersfield

HD1 4EW

Tel: 01484 344290 Fax: 01484 344288 email: [email protected]

Treasurer

Kate Baker

Physiotherapy Department Velindre Cancer Centre Whitchurch , Cardiff CF14 2TL

Tel: 029 20615888 ext 6340 Fax: email: [email protected]

Joint Study Day Liaison / Diversity Ruth McGuinness

Physio Dept Meadow House Hospice Uxbridge Road Southall UB1 3HW

Tel: 0208 967 5684 Fax: 0208 967 5756 email: [email protected]

Joint Study Day Liaison / Diversity Nicola Gingell

Physiotherapy Department

Kings College Hospital Denmark Hill London SE5 9RS

Tel: 0203 2999000 ext 4665 Fax: email: [email protected]

iCSP Liaison and Moderator (temporary post)

Hannah Young

7 Beechcroft Road Leicester LE2 3DA

Tel: 07985196220 Fax:

email: [email protected]

PRO Chiara DeBiase

Macmillan Information and Support Centre Cicely Saunders Institute King’s College Hospital

Denmark Hill, London SE5 9RS

Tel: 0203 299 5227 Fax: email: [email protected]

Newsletter editor

Margy Budden

Physiotherapy Department Southampton General Hospital Tremona Road, Southampton SO16 6YD

Tel: 023 8077 7222 Ext 6459 Bl 1131 Fax: 02380 794756 email: [email protected]

Education and Research Officer

Aileen McCartney

Wisdom Hospice High Bank St Williams Way Rochester Kent ME1 2NU

Tel: 01634 830456 Fax: email: [email protected]

Regional Reps Liaison Officer

Alison Allsopp

St Giles Hospice Fisherwick Road Whittington Lichfield Staffs WS14 9LH

Tel: 01543 432517 Fax: 01543 433346 email: Alison.Allsopp2@st-giles-

hospice.org.uk

Member Without Portfolio Kate Jones

Physiotherapy Department Royal Marsden Hospital Fulham Road London, SW3 6JJ

Tel: 020 7808 2821 Fax: email: [email protected]

Member Without Portfolio

Kerry McGrillen

Physiotherapy Department Marie Curie Hospice

1A Kensington Road Belfast BT5 6NF


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Regional Representatives

Northern

Ireland Diane Wilson

Physiotherapy Dept Belvoir Park Suite, Cancer Centre

Belfast Health and Social Care Trust Belfast BT9 7AB

Tel: 02890699317 Fax:


South Clare

Sherman

Specialist Musculoskeletal Oncology Physiotherapist, Dellwood Hospital Physiotherapy Outpatient Department Liebenrood Road, Reading

RG30 2DX


Scotland Susan Nuttall

c/o Physiotherapy Department Raigmore Hospital Old Perth Road, Inverness IV2 3UJ

Tel: 01463 704000 page 1184 Fax: 01463 711322 email: [email protected]

Yorks & Lincs

Gillian Smith

Physiotherapy Department Wakefield Hospice, Aberford Road Wakefield, West Yorkshire WF1 4TS


North Midlands

Sally

Jennings

Physiotherapy Department LOROS Hospice

Groby Road Leicester LE3 9QE


East Anglia Katrina

Patience

Physio Dept Colchester General Hospital Turner Road, Colchester, CO4 5JL


North East Rosemary

Wood

Physio. Department, Willowburn Hospice, Maiden Law Hospital, Lanchester, County Durham, DH7 0QN

Tel: 01207 529224 Fax: 01207529303 email: [email protected]

North West Jackie Barr East Lancashire Hospice Park Lee Road, Blackburn Lancashire, BB2 3NY


West

Midlands Susan Horne

Shakespeare Hospice Shottery, Stratford-on-Avon Warwickshire, CV37 9UL

Tel: 01789 205924 Fax: 01789 415081


London Jillian

Pemberton

Marie Curie Hospice Hampstead 11 Lyndhurst Gardens London NW3 5NS


South East Diana

Braithwaite

Hospice in the Weald Maidstone Road, Pembury Tunbridge Wells, Kent, TN2 4TA

Tel: 01892 820516 Fax: 01892 820520 email:[email protected]

North East

Thames Ann Bryan

Isabel Hospice Howlands

Welwyn Garden City Herts

Tel: 01707 373356 Fax:


South West Ruth James

Cornwall Macmillan Service 3 St Clement Vean Tregolls Road, Truro Cornwall, TR1 1RN

Tel: 01872 354384; 01579347462 Fax: 01872 354383 email: [email protected]

West (vacant) Unavailable Unavailable

South Wales

Sharon

Thomas

Y Bwthyn Newydd Princess of Wales Hospital Coity Road Bridgend

South Wales CF31 1RQ


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Reports

Report of the Chairperson

Dear ACPOPC members

Thank you to the study day team (Nicola, Carolyn and Kate) for a fabulous conference in Cardiff in May! I have had so many positive comments about this 2 day period that I really needed to emphasis what a great learning, networking and social experience it was. The whole event was run in a very professional but low key manner which encouraged audience debate and practice reflection – essential for our CPD. The palliative care theme was chosen after a gentle reminder, from some of our long standing members, that ACPOPC is more than cancer!

Sadly, I also must mention the retiring members of the committee: Val Young for her sensible no-nonsense attitude and ability to keep us calm, Mary Gardiner for her amazing negotiating skills, Joan Outram for her quiet reliability and Carolyn Moore for her ability to tackle adversity!! We will all miss these excellent team members, and indeed friends, as we move into our next year of planning and wish them well with all for the future. We do however have some enthusiastic new volunteers coming on board: Kerry McGrillen, Ruth McGuiness and Kate Jones and we look forward to introducing them to the role of the committee, and encouraging them to “jump in” and get involved in the business!

I have promised to keep this report short as the full AGM reports will also be published in this edition...so please refer to the AGM proceedings section to hear more about ACPOPC activities.

Best wishes

Jane Rankin-Watt

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Regional Reports

Update from the North East Region April 2011

Following our decision last year to split into sub groups due to our large geographical spread, we held our first annual study day & meeting in March. Our study day theme was `Issues Around End of Life Care` and three presentations were given by a hospice consultant, a specialist registrar in palliative care & a bereavement services co-ordinator. After this the sub groups gave feedback on their activity over the last 12 months. Common points included peer/clinical supervision, strategic & professional issues, case studies & reflection, standardising paperwork/assessments and clinical discussion e.g. acupuncture, TNS, breathlessness management, exercise.

It was agreed to continue with the current format i.e. sub groups meeting quarterly with an annual study day & meeting. As some interesting ideas were raised for future topics, we plan to get together for a half day in 6 months time to look at the use of the Wii with our patients.

The formation of sub groups has enabled members to attend meetings more regularly & feedback from the first study day has been very positive.

MINUTES OF MIDLANDS BRANCH ACPOPC MEETING 16th MARCH VENUE : ST MARY’S HOSPICE BIRMINGHAM Nine members were present for this meeting. BUSINESS: The meeting began with a two-hour introductory training session in “Mindfulness”. Two course trainers from Breathworks Mindfulness lead the practical workshop which introduced the ACPOPC members to the concept of mindfulness and how it can be used, for instance for pain control in cancer. The educational half of the meeting was followed by a group discussion. The first topic was the suggested possible loss of physiotherapy skills to e.g. physiotherapy assistants, complimentary therapists and nurses and also the problem of who, in a MDT, is sufficiently informed to be responsible for the referral of a cancer patient for Complimentary therapy i.e. oncologist or physiotherapist – or nurse? We also discussed the licensing of acupuncture therapists and the time constraints that inhibits some members from offering acupuncture treatments to patients. It was agreed that it would be preferable if a structured referral pathway existed for complimentary therapy or acupuncture from the consultant in oncology and palliative. It was also agreed that qualified physiotherapists working voluntarily alongside employed physiotherapists produced an uncomfortable and difficult situation for both parties and that the recently proposed joint PT/OT training was a retrograde step. LOCAL NEWS: This particularly highlighted the need for positive evidence- based practise to support requests for physiotherapy posts with the appropriate banding because many of are members are involved in working in hospices which are changing management or expanding their services. Next Meetings: June 29th 10am St Giles Hospice, Lindridge Road. (Refreshments provided and snack bar available). Topic : Feedback from courses recently attended and the ACPOPC Conference in Cardiff. September 14th Marie Curie Hospice Topic : CPD, peer group supervision and competency.

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ACPOPC AGM 10th May 2011 at 09.30, Churchill Hotel, Cardiff

The quorum should be 10% of the total voting membership or a minimum of 35 voting

members (whichever is the lesser).

In order to ensure that the AGM reached a quorum, the ACPOPC committee decided

to employ the use of proxy votes. Prior notification was given to the membership via

the website and iCSP. Ten proxy votes were received and thirty six members were

present, therefore a quorum was achieved.

1) Apologies:

Apologies were received from:

Aileen McCarthy, Hannah Young, Joan Outram and Chiara de Biase.

2) Minutes:

The minutes of the Annual General Meeting (AGM) held on 19th April 2010 at

the University of Ulster at Jordanstown, Belfast had been circulated in the

Summer 2010 newsletter and on ACPOPC website. The minutes were agreed,

pending the correction of a spelling error. Under ‘The Constitution’, Carrie

Mitchell should have read Kerry Mitchell. They were proposed by Jane

Rankin-Watt, seconded by Siobhan O’Mahony and adopted by a show of

hands.

3) Matters Arising:

There were no matters arising.

AGENDA ITEMS:

4) Vote on constitutional amendment, to change the term ‘assistant’ to

‘associate’. Jane Rankin-Watt explained the rationale behind the change. The motion

was proposed by Jane Rankin-Watt and seconded by Siobhan O’Mahony and passed by

a show of hands.

5) Vote on constitutional amendment, to include HPC registration as a

requirement for UK practicing physiotherapists. Again, Jane Rankin-Watt explained

that this emanated from CSP guidelines and would now be included on the membership

form. The motion was proposed by Jane Rankin-Watt, seconded by Siobhan O’Mahony

and passed by a show of hands.

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6) Approval of the annual reports of the committee.

Jane Rankin-Watt outlined the key developments in ACPOPC throughout the year

2010 – 2011. This included the restructuring process whereby CIOGs would now be

known as Professional Networks (PNs). Adrian Coleman has been appointed by the CSP

to lead on this project. ACPOPC have elected to move into the ‘Client Group’ alliance.

The ACPOPC constitution is currently being updated, in line with new guidance from

the CSP, pending clarification of some key terms and definitions. One of ACPOPC’s

objectives was to improve communication with its membership and this has been

addressed by strengthening our connection with the Regional Reps (ACPOPC has

provided training, access to study events and on-going support). In recognition of the

fact that the website was quite dated, we volunteered to be one of the first PN’s to

transfer to the new CSP website, which, though behind schedule, is expected to take

place late summer.. We will maintain our old ACPOPC website for the present time, as

it contains the membership database and the Regional Reps communication system.

We have also established a new ACPOPC ‘Twitter’ account. Jane Rankin-Watt also

explained that some committee members had been involved in writing some chapters

for a new book, to be published by Elsevier early in 2012. Finally, she thanked the

retiring committee members (Carolyn Moore, Joan Outram, Mary Gardiner and Val

Young), for their work and dedication. The annual reports were circulated to

delegates in their conference pack prior to the AGM. The reports were proposed by

Jane Rankin-Watt, seconded by Siobhan O’Mahony and passed by a show of hands.

7) Approval of the accounts for the year ending May 2011.

ACPOPC funds were down on the previous year and this was due to a number of

factors. Following the publication of the book ‘Rehabilitation in Cancer Care’, the

committee decided to offer a refund of £10.00 per book to all ACPOPC members.

Also, in view of ACPOPC’s decision to pursue a Masters’ level study programme on

Exercise and Rehabilitation in Cancer Care, which was run twice in 2010, at the

University of Ulster at Jordanstown, Belfast, the committee decided to offer £100

to applicants who had been a member of ACPOPC for a year, to support this learning

opportunity. Finally, as improving communications with the ACPOPC membership was

one of our objectives, the committee sponsored a training day for the Regional Reps

at the CSP in May 2010, which received excellent feedback. The accounts were

proposed by Jane Rankin-Watt, seconded by Siobhan O’Mahony and passed by a show

of hands.

8) Approval and Adoption of the Auditor

The auditor was proposed by Jane Rankin-Watt, seconded by Siobhan

O’Mahony and passed by a show of hands.

9) Approval of an increase in the ACPOPC membership fee from £20.00 to

£25.00. Jane Rankin-Watt explained that the membership fee had remained the

same for several years and represented very good value for money compared to the

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fees charged by other groups. The motion was proposed by Jane Rankin-Watt,

seconded by Siobhan O’Mahony and passed by a show of hands. 10) Election of the Executive Committee (En Bloc). Due to the retirement of

committee members Carolyn Moore, Joan Outram, Mary Gardiner and Val Young, some

restructuring of the committee was necessary. As the Chairperson, secretary and

treasurer will all be due to retire next year (2012), Kate Baker offered to continue in

her role as Treasurer, for another 2 years, to stagger the transition of key posts.

The post of Diversity Officer will cease to be a post in it’s own right and will now be

amalgamated with the joint study day liaison officers’ posts. Hannah Young has been

granted the temporary post of iCSP liaison and moderator, to support the committee

during the reconfiguration process and the transfer to the new CSP website. Three new nominations were proposed,

Ruth McGuinness (proposed by Nicola Gingell and seconded by Carolyn Moore.

Kate Jones (proposed by Carolyn Moore and seconded by Nicola Gingell) Kerry Mc

Grillen (proposed by Jane Rankin-Watt and seconded by Siobhan O’Mahony).

The current Executive Committee then stepped down and a vote was put to the floor,

to re-elect the incoming committee by a show of hands. This item was passed

unanimously.

The new committee therefore consists of

Chairperson - Jane Rankin,

Secretary – Siobhan O’Mahony

Membership Secretary – Lucie Hughes

Treasurer – Kate Baker

Study Day Liaison (incorporating Diversity) – Nicola Gingell/Ruth McGuinness

PRO – Chiara De Biase

iCSP Liaison and Moderator (temporary post) – Hannah Young

Newsletter Editor – Margy Budden

Education and Research Officer – Aileen McCartney

Regional Reps Liaison Officer – Alison Allsopp

Member without portfolio (to shadow the role of Secretary) – Kate Jones

Member without portfolio – Kerry McGrillen

Any other business.

There was no other business and the AGM was formally closed at 09.55.

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Report of the Chairperson

Change is everywhere at the moment and within the CSP it is no different! 2010/11 has been quite a challenge on many levels. The first and most significant change is the move from clinical interest groups (CIGs) to professional networks (PNs) which started as a consultation exercise a year ago. I would like to thank all the ACPOPC members who have participated in the debate regarding the various issues relating to this modernisation, and in particular Mary Gardiner, our CIG liaison officer, who has dedicated a lot of time and energy into ensuring that we have a strong voice at the table. As a result of the debate, ACPOPC is sitting within the Client Group PN as it was felt that we provide such a multi-dimensional service that it could not be covered by a specific MSK, respiratory or neurology title. We do have formal links with each of these groups to highlight the overlapping roles. We have also agreed to keep our current title as it reflects our area of expertise and chartered status. This discussion highlighted another change for many physiotherapists regarding the increasing demand and emphasis on survivorship care and specifically the need for increasing activity and re-conditioning. The Cancer Survivorship Initiative and the work from the National Cancer Rehabilitation Advisory Board (NCRAB) has helped to focus the need to move forward by providing tailored post cancer treatment care for our patients and, as chair, I now link formally with NCRAB and will provide updates via the Newsletter. The second change is the transfer of our old website onto icsp. ACPOPC was one of the first CIGs to create a website but we have been aware of the need to update. I would like to thank Ian Belchamber for his patience and skills in guiding us through the process and for helping us to prepare for the move. Hannah Young, a committee member without portfolio, has led the upgrading of the old site in preparation for the transfer to the new PNs’ section on icsp. Hannah has been really inventive and even launched a Twitter facility! We are planned to be one of the first tranches of old CIGS to move onto the new site and hope that all members appreciate the new format and content. Education also changed this year as the committee decided to challenge themselves and a university to provide an accredited study period. This successful enterprise resulted in 60 delegates, over 2 sessions, attending the exercise and lifestyle for patients with cancer (MSc module) programme at the University of Ulster. In particular I would like to thank Dr Jackie Gracey for her support in both helping to design and deliver the programme, particularly with the upset of the volcanic ash cloud! The committee recognise that this format is not suitable for all learning, especially with the current shortage of both funding and study leave, but will keep it on the agenda to provide similar level courses on a regular basis. However, in response to members’ comments, we are moving away from cancer and concentrating on the other aspects of palliative care for the May 2011 conference. Hopefully the balance of education topics and formats will suit all members. Finally, I would like to thank the retiring committee members: Carolyn Moore, Joan Outram, Mary Gardiner and Val Young. In particular I would like to thank Val who had extended her period in office to facilitate the handing over of the Newsletter, and had also held the position of ACPOPC secretary. All four will be sorely missed by the remaining committee as they provided inspiration and dependable support and action– essential for any effective team! Jane Rankin-Watt

Report of the Secretary My role as secretary of ACPOPC is varied and often non-specific. My main function is to provide secretarial support to the committee and this largely involves planning and organizing the committee meetings and the AGM. I also receive / filter the enquiries originating from the ACPOPC website – possibly pointing people in the right direction, or cascading information down, or maybe an invitation to review guidelines and all committee members get the opportunity (and are actively encouraged!) to volunteer for a variety of projects that come our way throughout the year.

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In August 2009, the ACPOPC committee received an invitation to contribute to a guide book, to be published by Elsevier Health Sciences, for physiotherapy students and band 5-6 physiotherapists working in ‘non-core’ areas of practice – in this case Oncology and Palliative Care. The brief was to write an evidence-based 5,000 word Assessment chapter and a 9,000 word Treatment Chapter, complete with multiple choice questions and case studies. The chapters were not intended to be the definitive guide to Oncology and Palliative Care, but rather to highlight the salient points to be considered in the physiotherapy assessment and treatment of patients in this field and to direct the reader to further sources of expertise. Four volunteers, Aileen Mc Cartney Kate Cobley, Siobhan O’Mahony and Karen Livingstone began planning the chapters, initially by email, and we had our first meeting on 29th January 2010, in London, to agree the essential areas to be covered and distribute the work. Having circulated several drafts to the committee members and colleagues, the text then had to be edited, as we had exceeded the word count considerably! Again, we sought the help of the ACPOPC committee to assist with this process as, to the authors, all the text had become very precious! Our final drafts were submitted in May 2010, to sighs of relief. It is anticipated that publication will be early in 2012. I would like to extend a big thank you to all who contributed to and reviewed the material and to those who offered advice, guidance and support. We will keep you informed on the progress with publication. You, the members, have contributed to ACPOPC in many ways over the past year, by writing reviews of courses, submitting your research findings, raising questions and volunteering opinions. It’s great to have such an active membership and I look forward to hearing from you all over the coming year Siobhan O’Mahony Secretary to ACPOPC

Report of the Treasurer ACPOPC FINANCIAL YEAR JANUARY 1ST TO DECEMBER 31ST 2010. INCOME Donations: No donations were received this year. Subscriptions: Income was slightly down from last year and we finished the year on £5,965. We have had slightly fewer members and therefore lower subscription fees. Thank you to those who paid promptly. Conference Fees: In light of the current financial climate we attempted to make the study days affordable this year. We therefore didn’t have a large income from conference fees hence we saw a loss from last year. Our income totalled £355. We hope members will continue to make every effort to attend conferences and study days in the future. Bank Interest: We weren’t able to gain a large interest on our accounts for the second year running unfortunately due to the current financial climate. Our bank interest payments were on a par with last year at £16.00. Advertising: Income from adverts placed in the ACPOPC newsletter/website was £50.00. CSP capitation fee: £2 per member paid annually to ACPOPC by CSP £550.00. EXPENDITURE Travel and Subsistence: Expenses incurred by Committee Members attending Committee meetings and other related ACPOPC representation and events were £4,146. As you are aware as a committee we endeavour

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to get the best value for money and continue to stress the importance of booking travel tickets early to get best value. Postage and stationary: A large part of postage and stationary costs are incurred from posting newsletters. We have managed to make a small saving on postage over the last year, spending £859. Printing and photocopying: Costs of printing Newsletters have dropped from last year to £1,309. Website: We have seen an increase in expenditure in order to update our website. This has been a project of ours this year as the old website was out of date. We have tried to make the ACPOPC website more user friendly and this is ongoing so we urge you to use the website regularly and provide us with feedback. Grants: A total of £2,120 has been paid to members both at undergraduate and post-graduate level to help with funding of courses and research. Members are continued to be encouraged to apply for funding, please see our updated grant policy on the ACPOPC website. Conference expenses: These are the expenses incurred in running study and conference days. This also includes lecture fees to speakers and their travel costs. We spent a total of £1843 this year. Book sponsorship: This is the amount we paid out for this financial year for members who sent in their receipts for the purchase of the rehabilitation book by Rankin et al. We had two book requests for 2010. Committee and regional development: None for the financial year of 2009. SUMMARY It is clear the ACPOPC accounts are once again down on the previous year. This is mainly due to planned controllable costs such as the website development and reduced revenue from areas including conference fees. Since the accounts have significantly dropped over the last few years I believe it is now important to maintain and then strengthen our position. On a personal note I would like to thank you all for the support you have given me in my second year as ACPOPC treasurer. We are in the process of changing banks in order to make the service more efficient. We also hope to have online banking which will allow me greater control for the forthcoming year, 2011. If anyone has any comments or queries regarding the report please don’t hesitate to contact me on the number below. Kate Baker Tel: 07989 449223 Email: [email protected]

Report of the Education and Research Officer This year has been another busy and exciting one in terms of research and education activities. The ACPOPC education fund has been popular and has awarded grants to a variety of individuals for activities including: a Doctorate in Professional Practice; attendance at the European Musculoskeletal Oncology Society Annual meeting; an MSc in physiotherapy; an exercise and lifestyle course; attendance at the Multi-national Association of Supportive Care in Cancer; attendance at the European Association for Palliative Care Research congress; an MSc in Practice Development and an acupuncture in oncology course. So quite a variety of exciting topics and it is wonderful to see so many ACPOPC members continuing to take on post-graduate studies related to oncology and palliative care. The ACPOPC Education Grant runs from January-January and has an available fund of £2000. In 2010 there was a residual £530 grant remaining. This remaining fund has been returned to the main ACPOPC account but earmarked for educational purposes. This will ensure ACPOPC’s monies are being used for the full benefit of the ACPOPC membership. The ACPOPC Education Grant Policy has been updated and can be found on the ACPOPC website www.acpopc.org.uk

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I encourage all our members to apply for a grant for course or research funding in order for progress in education and research in physiotherapy in oncology and palliative care to continue growing and developing. Aileen McCartney Education and Research Officer

Member Without Portfolio Report Although I have been a ‘member without portfolio’ (i.e. learning about how the committee functions) for the past year, I have been actively involved in a number of projects on behalf of ACPOPC. Having inherited the role of Move for Health Champion from the Membership Secretary, Lucie Hughes, I was lucky enough to attend the Move for Health Conference in London, last September. This proved to be a very informative day, especially in relation to the changes that are about to happen to the NHS. A more detailed report can be found in ‘In Touch’ for those who are interested. Whilst working in my capacity as Move for Health Champion I have been really inspired by the work a lot of ACPOPC members have done in setting up there own survivorship groups and exercise initiatives - I’m hoping by the time you read this report we will have a section on our website for Move for Health that will allow members to share their experiences and also provide a host of useful tips and resources on setting up such initiatives, however small or grand – watch this space! As some will be aware the CSP have been working through a process of modernisation over the past 2 years with regard to the structure of the CIS/SICs. ACPOPC have been very active in this process including online forum and In Touch Newsletter briefings, and have welcomed all membership input. A decision has been made to change the CIGs/SIGs to Professional Networks (PNs). This new structure consists of 6 Alliance groups which should, in the long term, improve communication to and from the CSP. The PNs will sit independently within one of the Alliance groups. In consultation with members, the committee have decided that ACPOPC sits best in the client group alliance; although we also want to link formally with other alliances whose work we will, at times, connect with. These alliances include neurosciences, neuromuscular, respiratory and wellbeing/ therapies groups. As part of this change, ACPOPCs website will soon be hosted through the CSP site, and will link with iCSP. The new website will include most of the current features included on our website, but unfortunately online joining and renewal will not be available at launch, ACPOPC are currently working on a way around this and will keep you informed. Being keen to be involved in these developments right from the start, ACPOPC agreed some time ago to be in the first wave of new website launches, but with significant delay to the project we have taken the decision to update our current website, which will ensure that members have consistent access to the web resources and that the transition period will (hopefully) be smooth. Much of this would not have been possible without the web expertise of Ian Belchamber, who maintains the current ACPOPC site, and the committee would like to extend a big thank you to him for all his hard work and dedication. As part of the website updates, you may have noticed that we now have news features on our home page, a monthly highlights article and a twitter account. We have also updated our links and reference pages for 2011. A present we are also expanding the information available on the committee, which will reflect any changes to our roles. As previously mentioned we also hope to add a ‘Move for Health Section’, and also a research blog which may be of interest to budding researchers! Unfortunately, these ‘bespoke’ items may not be available at the launch of our CSP site, but these will be added to our new site after the launch date. ACPOPC will keep you updated

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on any changes to the site and the launch of our new one, and as always we welcome comments and suggestions on how to continue to develop and improve our website! Hannah Young Member without Portfolio

Newsletter Editor Report 2010-2011 After somehow staying on the ACPOPC Committee in various guises for quite some time and having two stints as Newsletter Editor, it’s finally time for me to pass this interesting role on to someone else. My colleague Margy Budden will be taking over from May 2010 and will be the Newsletter Editor for the Summer In Touch. In Touch relies largely on contributions from members and as always we have had a year of interesting articles, feedback from courses and updates from around the regions. It is also a way to keep members informed and includes minutes from ACPOPC Executive Committee meetings, annual reports and feedback from the AGM. Jobs can be advertised for £50 and courses are currently free (although a free place or discount for ACPOPC members would be greatly appreciated). Thank you for all your contributions over the last year and please continue to send them together with any feedback to [email protected] Val Young Newsletter Editor

Report of the Membership Secretary We ended 2010 with 419 members. This was made up of the following membership categories:

• 338 with full membership • 13 with associate membership • 7 with oversees membership • 56 with department membership (universities/libraries that receive the newsletter free of

charge – in previous years many of these numbers came under associate membership) • 7 with student / assistant membership

This represents an increase in total membership of 2 since 2009. There were 69 new members joining in 2010. Membership on the 3rd of April 2011 stood at 310 members, 28 of which were new. One hundred and forty-six members are still to renew from last year, though forty of these are department memberships so do not add to the membership capital. The membership secretary is currently pursuing these forty members for accurate postal address details. Both sets of renewals have been sent out for this year, though members do continue to return them throughout the year along with new membership requests. Thank you to all those members who have checked and amended their details on their renewals and added further information. I have updated this in so far as the constraints of the system allows. Most fields are restricted to one or two options, so I apologise if you have taken the trouble to send further information which does not appear on the database details. Please could members also ensure that ACPOPC has up to date information on your CSP membership. The CSP provides ACPOPC with a capitation fee for all CSP members, so please do

16

ensure we have your membership number. The membership secretary is very happy to receive this information by email again if you are unsure whether we have your CSP number. Membership also now requires that you provide your HPC number. We are collecting this for new members, but have yet to gather this from existing members. You will be requested to provide this with your 2012 renewals. There are also likely to be further changes to membership over the next year or so due to our move from a CSP CIG/SIG group into the Professional Networks (PNs). We will keep you updated on this issue. I would also like to remind members that you may access contact details of colleagues via the database and many of the regional groups find this a useful way of keeping in touch. Please note that your details will only be available if you have indicated you have agreed to your details being included in the membership directory. May I take this last opportunity to remind you to get your renewal forms in the post if you have not already done so and also to remind your colleagues! Many thanks Lucie Hughes Membership Secretary (email: [email protected])

Report of the Public Relations Officer (PRO)

Before I highlight some of the past 12 month’s achievements, I would like to briefly explain the role of the PRO.

The responsibilities include:

• Promote the activities of ACPOPC, e.g. liaison with the press.

• Promote the role of ACPOPC to the public and to other health care professionals.

• Work closely with, and receive support from, the Press and PR Unit at the CSP.

• To speak with or arrange for someone else to speak with local press/radio on issues relevant to ACPOPC.

• To be responsible for the display boards and display material at national meeting and other events.

This last year has once again been an exciting time for physiotherapists and all allied health professionals working in cancer and palliative care. ACPOPC has continued to work tirelessly to engage with national guidelines and publications, to ensure the dynamic and varied roles of physiotherapists working in oncology and palliative care are recognised. ACPOPC members have continued to have significant input into the relevant NICE guidance that has been published over the last 12 months and the response from members to our requests for comments via iCSP are greatly valued. Frontline has had several articles published this year with a Cancer and Palliative care focus. The first article was published in the 21st July, 2010 issue which explores how we can improve end of life care in the acute hospital setting. It provides a fantastic resource for therapists on the NHS National End of Life Care Program website called the ‘Route To Success’ which explores the three key End of Life tools; the Liverpool Care Pathway, Gold Standards Framework and the Preferred Priorities for Care. Alongside these are 15 very helpful and informative ‘Support Sheets’ in PDF format that cover issues ranging from ‘Principles of good communication’ and ‘Decisions made in a person’s best interest’ to ‘Dignity in end of life care’. ‘Route to Success’ can be found at www.endoflifecare.nhs.uk/routes_to_success

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The issue on the 1st September, 2010 praised the efforts of Senior Physiotherapist at The Christie in Manchester, Nicola Chesman, who set up a wonderful scheme for patients who have survived cancer as a teenager or young adult (TYA), in a collaborative venture with Manchester City Council and a prestigious local tennis club (The Northern Lawn Tennis Club). It is free for the patients, and the much-reduced coaching fee has been paid for by a donation from The Christie Charity. This is a great example of how collaborative working between different public sector authorities can produce huge benefits for patients, and what can be achieved by forging relationships with the local community.

The 3rd November issue addressed the issue of recovery from breast reconstruction surgery for breast cancer. The article interviewed several physiotherapists from the ACPOPC membership who all commented on the current situation with regards to rehabilitation, stating that this was another area in need of further research in order to improve functional outcome for women having this surgery.

The early December issue had the two most recent articles. Anna Campbell has been involved in the production of a new DVD from Breast Cancer Care which looks at the physical recovery after surgery for the first 12 weeks and beyond. This work was done in association with physiotherapy team from Huddersfield and Calderdale NHS Foundation Trust. You can access this DVD through the Breast Cancer Care website at www.breastcancercare.org.uk

The other article in this publication was recognising the achievements of Dr Jacqueline Todd, Consultant Physiotherapist in Lymphoedema, who won the British Medical Association patient information award at the BMA Book Awards 2010. This is a wonderful book that provides information for children about Lymphoedema and its treatment.

There are two physiotherapy books due to be published later this year by Elsevier Health Sciences that have had the Oncology and Palliative Care chapters written by some of the ACPOPC committee and other ACPOPC members. The current working titles are ‘The Physiotherapy Guide for Clinicians on Rotation: Assessment of all non-core areas’ and ‘The Physiotherapy Guide for Clinicians on Rotation: Treatment in all non-core areas’. This sort of work is a huge undertaking so congratulations to all who are involved and we look forward to reading the final product! This has been another successful, busy year for all ACPOPC members so I would like to take this opportunity to thank everyone who has contributed and encourage you all to make sure your voices are heard and get involved with raising our profile at every opportunity. Don't forget that if you are holding any study days, open days, conferences etc, then we have a set of photographs and information that you can use to create a stand to advertise the good work we are all involved in. Finally, if you, or anybody you know, have been involved in setting up a new service, innovative or patient centred work, or have some interesting research to share, let me know, as we would like to continue to publicise such work in Frontline, and even the local press, and share with the rest of the profession and the public. Thank you again for your support! Chiara De Biase [email protected]

Study Day Liaison Officer Report 2010-2011 The first ACOPOC study event to be accredited and validated as a M level module by the University of Ulster took place last Spring in Northern Ireland. “Exercise and Lifestyle in

18

Rehabilitation and Cancer Survivorship” was lead by Dr Anna Campbell, Dr Jackie Gracey and Dr Karen Robb. The module was not only topical in the light of the National Cancer Survivorship Initiative but also helped provide the evidence that physiotherapy can play an important role in the long term management of cancer patients. Regretfully, after a lot of work, we were not able to put together an ACPOPC program at Congress last year. Despite being involved at the early meetings it proved impossible to co-ordinate an oncology /palliative care program across the four strands of Cardio/Respiratory, MSK, Neurology and Health, Work and Wellbeing as each strand is independently managed. The committee have decided to run its own autumn study event in future, to continue our commitment of providing biannual study events for our members. We are looking forward to the ACPOPC Spring Conference in Cardiff this year which is focussed on Palliative Care and this time also includes sessions focussing non malignant conditions as well as cancer. As always we hope this will be an opportunity to network and gain support and ideas from other practitioners working in this rewarding area of physiotherapy Thank you for all your support and look forward to another busy year. Carolyn Moore and Nicola Gingell Joint ACPOPC study day liaison officers

Report from Regional Representative Officer ACPOPC Committee May 2011

In November 2009 it was decided by the committee that Alison Allsopp should take on the role of the Regional Representative (R.R) Co-ordinator.

Initially all known RR were contacted to provide ACPOPC with an up to date data base. Letters of communication were e mailed out, passing on news from the committee and a copies of the latest minutes agreed by the committee. There was also a request for news and views from regional groups.

A RRs meeting was organised and held at the CSP Headquarters on 6th May 2010. The aim of which was to facilitate shared learning across the UK and provide support to ACPOPC RRs . Another aim was to agree a job description for RRs so that those taking on the role would have some specific guidance as to the extent of the role. Also, to provide explanations of the roles of the executive committee, facilitate the learning of meeting skills , improve participants use of the ACPOPC website, database and ICSP and introduce the roles of the ca network lead AHP and AHP cancer lead forum.The meeting was chaired by Alison Allsopp and Jane Rankin and attended by 10 out of the 14 national RRs It was agreed that the RR post would be held for 3 years and a meeting with the executive committee would be held every 2 years. The RR would be entitled to attend one study day free of charge and be paid expenses for official meetings and the study day. A report of areas activity would be submitted on a rota basis for feedback to ACPOPC members via in Touch. The general consensus was that this meeting was useful to all who attended .

Several groups have fed back that they are organising programmes or relaunching and the post of East Anglia has now been filled.

Study places were offered to 5 RRs for the spring conference, three of which have been taken and a RR meeting is planned at the end of the first day of the Cardiff Spring Conference.

A data base of power point presentations is being formulated and can be accessed via Alison Allsopp, who will continue to contact RR with news and updates following Executive Committee meetings and provide a link between the committee and RRs.

Alison Allsopp

Regional Representative Coordinator

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2010 - 2011 Annual Report of the CIOG Liaison Committee Representative

The CIGLC role has been much quieter this year. The work on the ACPOPC Constitution was completed when the Constitution was adopted at the ACPOPC AGM in the Spring. It will probably need more adjustments as the work continues with the new Professional Networks structure, but the framework is now in place to make this easier.

The other major piece of work was liaising with the CSP I.T. department for the CSP website to host the ACPOPC website. ACPOPOC committee were keen to be included in the first tranche of CIOGs to migrate to the site, and the transition work continues. Hannah Young has worked hard to make recommendations to the current ACPOPC website and prepare it for the migration.

We hope that members will be pleased with the greatly improved functionality of the site when it will be launched later this year.

The CIOGLC representative role ceased in September 2010. As members are aware the CIOGs are now known as Professional networks and each has been placed within one of the six Alliance Groups. This is very much a work in progress and is currently being taken forward by the Professional Network Chairs.

Mary Gardiner

CIOG Liaison Committee Officer

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MEMBERSHIP APPLICATION / RENEWAL 2011 � New Member � Existing Member State ACPOPC Membership No � �

I wish to apply for membership for the year 1 January 2011 - 31 December 2011

(Please refer to terms and conditions found at www.acpopc.org.uk for the following membership categories)

A Full Membership £25.00

I am currently a subscribing member of the Chartered Society of Physiotherapy (CSP) and I am registered with the

Health Professional Council (HPC). I enclose a cheque for £25.00.

Signature CSP No.

HPC No. (mandatory)

B Associate / Assistant Membership £25.00

If a member of the Health Professional Council (HPC) please detail your number. I enclose a cheque for £25.00.

Signature HPC No.

C Student Membership £10.00

I am a student currently studying in the UK. I enclose a cheque for £10.00.

Signature CSP No.

D Oversees Membership £25.00

I enclose a cheque for £25.00 and a photocopy of my professional qualification certificate. (Please note overseas

cheques should be in Pounds Sterling)

Signature

E Department Membership No charge (but donation welcome)

I am registering on behalf of a University, library or college.

Signature

PERSONAL DETAILS PLEASE COMPLETE IN BLOCK CAPITALS

First Name

Last Name

Grade

Postal Address

Home Address

Post Code

Post Code

Telephone

Telephone

EMAIL (please only give one address)

�� I am unwilling for my postal address details to be released for professional and directory purposes

21

What is your primary area of work in relation to cancer and palliative care? Please tick one only.

�� oncology

�� palliative care

�� management in oncology

�� management in palliative care

�� haematology

�� lymphoedema

�� academic

�� generalist

�� other

What is your secondary area of work in relation to cancer and palliative care? Please tick one only.

�� oncology

�� palliative care

�� management in oncology

�� management in palliative care

�� haematology

�� lymphoedema

�� academic

�� generalist

�� other

Where appropriate, please indicate one tumour site specialism.

�� breast

�� head and neck �� upper GI

�� colorectal

�� gynaecology

�� urology

�� lung

�� brain CNS �� sarcoma

�� haematology

�� skin

Please return this form with remittance to:

Lucie Hughes

ACPOPC Membership Secretary

Macmillan Rehab Team

Princess Royal Community Health

Centre

Greenhead Road

Huddersfield

HD1 4EW

Please enclose a stamped self-addressed envelope if receipt is required

Cheques should be made payable to:

The Association of Chartered Physiotherapists in Oncology and Palliative Care

Please remember to ensure you have written your name and ACPOPC number, if known,

on the back of your cheque

Thank you

22

Bulletin Board

CSP Practice & Development Elections 2011-2013

The CSP is now calling for nominations to fill vacancies on the P & D committee

for a 2 year term of office starting with the Society’s AGM on Sat 8th October 2011. This is an opportunity for members to help develop policy in a time of rapid change.

For more information follow the link below http://www.csp.org.uk/documents/call-nominations-election-csps-practice-

development-committees

23

Courses

CONNECTIVE TISSUE COURSES:

An integrated approach – understanding our connective tissue “Its role in the management of Complaints after Breast Cancer Treatment”:

Manchester: Level 1 - October 8th/9th, 2011

Level 2 - October 10th, 2011

The Christie NHS Foundation Trust: Lena Richards / Karen Goodwin, Rehabilitation Unit, The Christie NHS Foundation Trust, Wilmslow Road, Withington, Manchester M20 4BX.

Tel: 0161 446 3795 / 446 8150, e-mail: [email protected],

[email protected]

Course Programme: Our course goal will be to share with you how normal day-to-day function is changed by interference with the fascial and connective tissue anatomy. By understanding how various systems interlink to determine function, we can explore new and integrated treatment strategies as a tool to relieve the post surgical and radiotherapy trauma following breast surgery including reconstruction. This workshop will be a good mix of practical and academic work, and the number of participants will therefore be limited. Suitable for Physiotherapists / Therapists working with breast cancer patients, e.g. Oncology / Women’s Health, Primary Care and Musculoskeletal settings.

∞∞∞∞∞∞∞

Course Tutor: Willie Fourie, Johannesburg, South Africa

Cost: Two day course: £225, One day course: £115 (to include course notes, tea and coffee)

Applications: Please telephone, e-mail or write to the course organisers for an

application form.

24

Cancer Survivorship

25

Exercise and Lifestyle in Rehabilitation and Cancer Survivorship

23rd, 24th and 25th April 2012

AHP Academy, University of Ulster, Northern Ireland

Day 1 – Exercise in Cancer Rehabilitation Day 2 - Exercise, Symptom Management and Behaviour Change in

Cancer Populations Day 3 - Interventions and Practical Application

Key Speakers:

Dr Anna Campbell (Honorary Research Fellow, Dept of Surgery University of Glasgow)

Dr Gareth Davidson (Senior lecturer in Sport and Exercise Medicine, University of

Ulster)

Dr Jackie Gracey (Lecturer in Physiotherapy, University of Ulster)

Ms Jane Rankin (Chair of the Association of Chartered Physiotherapists in Oncology

and Palliative Care)

Prof Max Watson (Consultant in Palliative Medicine, Honorary Prof University of Ulster)

Provisional Fees (TBC)

1 day attendance only: £150.00 Early-bird rate £135.00 2 day attendance only: £250.00 Early-bird rate £230.00 3 day attendance only: £370.00 Early-bird rate £340.00 3 day attendance Masters module credit bearing: £650.00 (30 credit points at masters level) Early-bird rate: £625.00

If registered on PgCert/Dip/MSc: £612.00 Closing Date: 26

th March 2012 Early-bird Closing Date: 27

th February 2012

For more information see the AHP Academy website or contact: Dr Jackie Gracey ([email protected])

Exercise and Lifestyle in Rehabilitation

and Cancer Survivorship

www.ulster.ac.uk/ahpacademy

26

MSc Clinical Leadership in Cancer, Palliative and End of Life Care

27

Living longer, dying slower

28

Feedback

Study Day; West of Scotland Branch of ACPOPC A study day was held in Strathcarron hospice in March 2011 for west of Scotland members of ACPOPC. This group of physiotherapists were formerly the West of Scotland clinical interest group who met quarterly for a half day to discuss and share their clinical practices. The group continued to expand to include more outlying hospices and it was felt that it would be a more efficient use of time to convert to full day events where CPD activities could be done in the morning and the interest group discussions done as previously in the afternoon session. The study day held in Strathcarron was the second of these days. In total 11 members were present with representatives from Inverness, Forth valley, fife, Glasgow and Ayr, in the lovely surroundings of Strathcarron Hospice. The morning session began with a critical viewing of a new ‘carers DVD’ that has been produced by Strathcarron to give to relatives who will be required to move and handle family members at home. The DVD covers most types of M and H situations and gives really clear verbal and visual instructions. The physiotherapist and occupational therapist at Strathcarron conducted a questionnaire to establish the need for such a tool and were the key to its production coming up with scripts, actors and even design of the DVD. After viewing we all gave comments and discussed the value of using such a tool in our own hospices. The DVD was of a high quality and had the correct balance of advice without being too detailed and confusing for relatives. The plan is to pilot the DVD in Strathcarron with a view to it being used in the other hospices too. The second half of the morning session was devoted to goal setting and rehabilitation in palliative care. Speaker Sally Boa originally trained as a speech therapist but for the last 2 years had been working on a research project in conjunction with Strathcarron looking at goal setting in palliative care. Her aim is to devise a model which professionals working in palliative care could use to ensure that goal setting and rehabilitation meet the needs of this group of patients. Sally’s talk provoked some good discussions about our current practises. It was felt by the group as a whole that it is a difficult area of patient care and although we all did some form of goal setting these goals often changed radically and quickly as patient’s conditions changed. Sally remarked that most of the aims for a patient documented in clinical notes were treatment aims and not usually patient’s personal aims. We need to focus more on the hopes/aims of the patient even if we feel these are sometimes unrealistic. There then followed a short tour of the hospice ward and day hospital before a lovely lunch provided by the hospice. In the afternoon we held the interest group meeting to share our current clinical practices. The physiotherapist at Strathcarron has devised competencies for all clinical staff with regard to moving and handling patients and also for tracheal suction. Each staff member must ensure that they have these competencies reviewed yearly to highlight any training needs. The physiotherapist from the Prince and Princess of Wales Hospice in Glasgow shared her reservations about the new paperlight system of computerised clinical notes which will commence in April. It was anticipated there would be problems but the Highland Hospice was already using some of the system with good effect so we will just have to wait until the next study day to see how it has gone. It was great to meet with other physios working in palliative care and to share our problems or successes. Having CPD activities at the same time made the day more worthwhile for everyone. It meant the day was educational, good fun and professionally useful for us all. It would be great to have more physios in palliative care joining us the next time.

Alison Arnott

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Research

Summary of the research on patient self-referral to physiotherapy withinoncology and palliative care undertaken with the ACPOPC

membership 2010

Introduction

Patient self-referral to AHP services is not a new concept, though over recent years there has been a growing interest

throughout the UK for such systems to be in place within the NHS. Self-referral underpins current healthcare policies

such as choice, access and self-care/self-management and is also endorsed by professional bodies such as the CSP.

There have been significant developments in offering patient self-referral within musculoskeletal physiotherapy in

primary care. National trials have been conducted in Scotland and England. These studies have shown that patient

self-referral is accepted and supported by physiotherapists and GPs. They have also established that there are clear

benefits to the patient and services (DOH, 2008).

The big concern regarding the introduction of patient self-referral that has hindered its development has been the

fear of being “overwhelmed” (Holdsworth and Webster, 2006). Holdsworth, Webster & McFadyen (2006) found in

reality that overall referral rates did not increase following the introduction of patient self-referral except where there

had been a historical under provision of the service.

In the UK the ACPOPC committee were interested to ascertain from its membership what the position of patient self-

referral was within the field of oncology and palliative care. A literature search of key databases showed that there

were was no published literature on patient self-referral to physiotherapy specifically within the field of oncology and

palliative care between 1995 to May 2011. The present author undertook to research this for her MSc dissertation

with the permission of the ACPOPC committee.

Aims

Discover to what extent and how physiotherapists are adopting patient self-referral within oncology and palliative

care.

Explore the attitudes and perceptions of physiotherapists in adopting patient self-referral within oncology and

palliative care.

Research design

The research study used a mixed method design known as sequential explanatory strategy (Cresswell 2003; Rauscher

& Greenfield 2009). This involved two phases to the design; the first phase was primarily quantitative and the second

phase qualitative.

Method

Phase 1 was a postal questionnaire containing a mix of open and closed questions relating to patient self-referral

targeted at individual physiotherapists who were members of ACPOPC. Phase 2 consisted of follow-up telephone

interviews with individual interview schedules. The telephone interviews were designed specifically to provide an

opportunity for more in-depth exploration and discussion of selected key findings from phase 1. Telephone interviews

were chosen as it was the most appropriate and time-effective way to interview people from different regions of the

UK. Full transcripts of the interviews were made.

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Sample

All members of ACPOPC in the UK were sent a postal questionnaire (Respondents). Six of these (Participants A – F)

were subsequently selected from those who had agreed to a follow-up telephone interview for the second phase.

Four of these participants worked within a service that offered a form of patient self-referral. These four were chosen

because they specialised in different patient groups and worked in a range of work settings. The two remaining

participants were chosen as one worked in a service that used to offer patient self-referral but took a policy decision

to stop and the other was a respondent that currently did not offer self-referral but had indicated some priority to

establish it in the future.

Analysis

Phase 1

A code book was developed for the entry of data from the questionnaires into SPSS (Version 17). Guidance from

Pallant (2001) was very useful in coding, entering and cleaning the data and choosing the appropriate outputs from

SPSS. Descriptive and inferential statistics were used. The descriptive statistics used were frequencies, means and

standard deviations. Both non-parametric and parametric tests were used in analysing the data from the

questionnaires. The level of significance was set at 5% with confidence levels of 95%. The tests were two-tailed.

Phase 2

An ordinary word-processing programme was used for coding and organising the data into themes as advocated by

Lofland, Snow, Anderson & Lofland (2006). Direct quotes were used to retain the richness of the data and give

authenticity as recommended by authors such as Bryman (2008) and Tashakkori and Teddle (2003). Findings from

phases 1 and 2 were integrated as the interview findings were intended to clarify and expand upon the issues in phase

1.

Results

A response rate of 44% was achieved with 118 respondents returning the questionnaire. 80.5% of physiotherapists

were in favour of patient self-referral within the field of oncology and palliative care. They identified a range of

benefits and reservations regarding patient self-referral. The four most frequently cited benefits were quicker access

(44%), timely intervention (32%), patient autonomy (31%) and ease of access to service (20%). The three most

frequently reported reservations were inappropriate referrals (34%), increased workload (30%) and access to medical

history (29%). Views on the benefits and reservations were obtained from the participants. The participants offered a

different perspective on the reservations and indicated how they could be managed. Key examples of how to achieve

this were to have specific service criteria appropriate to the service, an effective triage system, good MDT

communications and links, secretarial support, good IT systems for accessing medical records and supervision for

junior staff.

There were statistical significant differences between respondents whose service offered self-referral and those

whose service did not in relation to attitude (p = 0.003), the perceived average number of benefits of self-referral (p =

0.026) and to the number of respondents having reservations (p = 0.001). The respondents, whose service offered

self-referral, had a more favourable attitude, identified more benefits and fewer of them had reservations regarding

self-referral than those respondents whose service did not offer self-referral.

Two-thirds of respondents (53/80) whose service did not offer patient self-referral indicated that they would perceive

the level of patient demand for patient self-referral to be ‘moderate’. In relation to respondents whose service

offered self-referral (n = 38), the level of demand from patients was perceived to be minimal by 58% of respondents

(22/38), moderate by 34% of respondents (13/38) and extensive by 8% of respondents (3/38). In relation to workload,

the majority of the respondents (68% 26/38) indicated that their workload of self-referred patients was 5% or below,

with only a small percentage of the respondents (8%, 3/38) estimating their workload to be high (50% of caseload).

Sixty-one percent considered that there are particular patient groups who would benefit from the facility of patient

self-referral for physiotherapy within the field of oncology and palliative care and a number of suitable groups were

identified. The four most frequently identified categories were patients with lymphoedema (28% 22/80),

breathlessness (25% 20/80), breast cancer (20% 16/80) and post treatment for cancer (19% 15/80). The respondents

and participants gave a rationale for why they had considered particular patient groups to be suitable for patient self-

31

referral and this covered themes such as the importance of self-management, getting help quickly at the point of need

and overcoming other health professionals not referring to physiotherapy due to their lack of awareness of the

physiotherapy role.

Approximately a third of respondents offered some form of self-referral service (38/118). Fifteen categories of self-

referral service were found and some of these were more inclusive than others. For example, one category had an

‘open door policy across the whole physiotherapy department’ whilst a number of other categories were limited to a

very specific patient group and/or service. The three most frequently reported categories were:- known to hospice –

open access policy for physiotherapy (42% 16/38), breast rehabilitation (13% 5/38) and re-referral once having

received physiotherapy for a particular condition (13% 5/38). For the last category mentioned there were differences

in the respondents views as to whether re-referral counted as a form of self-referral. Holdsworth and Webster (2006)

are of the opinion that this does not represent true self-referral as patients require a formal referral to gain access to

the service in the first instance. The CSP on the other hand, in a paper on patient self-referral, explains that one of the

main benefits of self-referral is that it gives patients an easy route back into services. This implies that re-referral is a

form of self-referral.

Twenty-one percent (8/38) of respondents whose service offered patient self-referral stated that their service had

written information on patient self-referral. Four respondents provided copies of the material that was aimed at

patients and these included an information leaflet on a breast rehabilitation scheme, two leaflets explaining the role

of physiotherapy and a poster inviting patients to self-refer for particular problems. These were considered as useful

in promoting patient education, in raising awareness of the role and benefits of physiotherapy and in facilitating

patient self-referral. In view of the low numbers this was considered to be an underdeveloped area.

Sixty-six percent of the respondents (25/38) gave their views on what important lessons they had learnt in offering

patient self-referral. These included the following sub-themes:

• The importance of gaining a full knowledge of patients’ medical history

• Patient self-referral is important and identifies to medical services what patients require

• Patient self-referral ensures a flexible service

• The need to have clear guidelines and criteria

• The need for education of both patients and medical staff about the role and benefits of

physiotherapy

• The need for good administrative support

• The need for experienced physiotherapists

• Patient self-referral does not overwhelm the service

The research obtained detailed accounts from four participants of how their of self-referral service operated.

Guidance was offered to others on setting up a self-referral service for physiotherapy based primarily on the

participants’ views on eight themes. These were education, learning from others, seeking and gaining support for

patient self-referral, funding, governance, management of change and good leadership, and conducting a pilot. The

research showed that 32.5% of respondents who do not currently offer patient self-referral would give a moderate or

high priority to establishing self-referral in their service.

Conclusions

This research has established that the majority of respondents working in the field of oncology and palliative care are

in favour of patient self-referral to physiotherapy, though only a third worked in a service that offered this facility.

The respondents identified a range of benefits of patient self-referral, though they also had reservations about this

form of access. There were differences between respondents who worked in a service that offered self-referral and

respondents who worked in a service that did not offer self-referral. Experience of working within a service that

offered self-referral was associated with a more favourable attitude, a higher average number of reported benefits

and with fewer respondents reporting reservations. Key suggestions on how the reservations could be managed were

identified. Specific patient groups were also identified as being particularly suitable for patient self-referral.

This research has given a preliminary overview of what has been happening in relation to self-referral to

physiotherapy within oncology and palliative care in the UK. It is a timely piece of research for the profession and

hopefully will help the development of self-referral to physiotherapy within oncology and palliative care. Government

policy is encouraging improved access to services for patients and this research gives some indications for the way

forward for patient self-referral for physiotherapy within the field of oncology and palliative care. The research has

32

established implications for practice and has provided some guidance on how to move forward the agenda of patient

self-referral within the field of oncology and palliative care.

I feel it is appropriate to leave the last words to the voice of participant D. She said “it is quite tough to implement

self-referral….the fact that we’re actually removing a gate keeper if you like, is challenging for some staff, and I think

other people will think it will just function on its own but actually it’s much more complex than that. It needs serious

thought and design to make it work. It’s something we should be aiming for.”

References

Bryman A. (2008) Social Research Methods, Oxford, Oxford University Press.

Creswell J.W. (2003) Research Design: Qualitative, Quantitative & Mixed Methods Approaches, London, Sage

Publications.

DOH (2008) Self-referral pilots to musculoskeletal physiotherapy and the implications for improving access to other

AHP services, London, DOH.

Holdsworth L.K. & Webster V.S. (2006) Patient Self Referral, a guide for therapists, Radcliffe Publishing Ltd, Oxford.

Holdsworth L.K., Webster V.S. & McFadyen A.K. (2006) Self-referral to physiotherapy: deprivation and geographical

setting. Is there a relationship? Results of a national trial. Physiotherapy, Vol: 92, p16-25.

Lofland J., Snow D., Anderson L. & Lofland L.H. (2006) Analyzing Social Sciences: A Guide To Qualitative Observation

and Analysis, 4th

edition, United Kingdom, Wadsworth.

Pallant J. (2001) SPSS Survival Manual, Open University Press, Buckingham.

Rauscher L. & Greenfield B.H. (2009) Advancements in Contemporary Physical Therapy Research: Use of Mixed

Methods Designs, Physical Therapy, Vol: 89, No. 1, p91-100.

Tashakkori A. & Teddlie C. (2003) (Editors) Handbook of Mixed Methods in Social & Behavioural Research, London,

Sage Publications.

Acknowledgements

I would like to thank the ACPOPC committee for making the study possible and for the grant towards the expenses of

the study. I would also like to thank all the respondents and the participants for giving so willingly of their time. They

ultimately made the study possible.

If you would like to get further details on this research, my MSc dissertation in Practice Development will be available

online via Manchester Metropolitan University after it has been assessed. The title of the research is ‘A sequential

explanatory mixed method study exploring patient self-referral for physiotherapy within the field of oncology and

palliative care’.

Lucie Hughes

33

Articles

Hackman D (2010) “What’s the Point?”

Exploring rehabilitation for people with 1° CNS Tumours using Ethnography: patients’ perspectives.

Physiotherapy Research International DOI: 10.1002/pri.506 Available at:

http://onlinelibrary.wiley.com/doi/10.1002/pri.506/abstract.Copyright © 2010 John Wiley & Sons, Ltd.

Abstract

Background and Purpose. Primary central nervous system (1° CNS) tumours represent 2% of cancers. They record

the third highest mortality from cancer in the 18–35 age group in the UK today. Despite improving medical treatments,

prognosis remains poor, with more patients experiencing residual complex functional deficits. Rehabilitation for these

patients is scantily researched. Observational studies demonstrate improved function following inpatient and some

outpatient multi-professional rehabilitation. Comparative recovery and functional improvement between patients with 1°

CNS tumours and differing oncological and other neurological diagnoses is shown. Qualitative papers explore patient's

values of medical treatment, demonstrating themes of hope and improved quality of life (QOL). No studies explore the

significance of rehabilitation for these patients. The aim of this study was to discover the meaning of rehabilitation for

people with this life-limiting illness through ethnographic enquiry.

Methods. Fieldwork data, primarily written narratives, field notes and interviews, were collected from 10 patients with 1°

CNS tumours receiving physiotherapy at a UK specialist cancer hospital. They were asked what they thought the

purpose of rehabilitation was in the context of their disease. Thematic analysis explored this data.

Results. Patient experience provided insightful perception of the beneficial role of rehabilitation in the context of their

incurable disease. Main emergent themes included independence, confidence, ‘professional talk’ (the broader sense of

communication through talk, touch and therapeutic handling) and hope. An analogy presents an analytical model of the

themes. Incidental findings identified difficulty accessing services.

Conclusion. Rehabilitation intervention offers positive contributions to patients with 1° CNS tumours improving QOL

irrespective of the stage of their disease. With equal access to cancer services, a key aim advocated in national

directives in health-care today, it is essential that patients receiving treatment for this life-limiting disease have timely

access to rehabilitation services in conjunction with holistic medical management.

Diz Hackman Clinical Specialist Physiotherapist Physiotherapy The Royal Marsden NHS Foundation Trust Tel 0208 661 3098 Fax 0208 915 6714

34

Features

Media Release

Innovative healthcare project launched to highlight early signs of MSCC

Researchers at the University of Central Lancashire (UCLan) have played a major role in a new initiative

that will supply 9,000 primary care clinicians in the North-West with key information to assist the early

identification of Metastatic Spinal Cord Compression (MSCC).

The initiative has been backed by a group of elite medical experts in the North-West - The Greater

Manchester and Cheshire Cancer Network (GMCCN), The Christie, Bolton PCT and UCLan. While

GMCCN have funded the project, the collaboration saw all the partners work together to develop the content

for the project.

The project has been launched as statistics show that 25% of patients with MSCC are not being diagnosed in

the primary stages. Consequences in delaying the treatment of MSCC can include paraplegia or quadriplegia,

the loss of bladder control and bowel function with associated loss of quality of life[1].

The project will be delivered in a totally unique way in the form of 9,000 RED FLAG cards which is

a credit card sized reminder that can be distributed amongst all staff who potentially may come into

contact with this patient group. The RED FLAG acronym has been used to alert the clinician to a

series of symptoms which can indicate serious spinal pathology. These have been funded by The

Greater Manchester and Cheshire Cancer Network for non-expert clinicians to use in the clinical setting of

primary care.

Helen Barlow, Clinical Director (Quality and Care),Greater Manchester and Cheshire Cancer Network,

commented: “We were keen to back this project, as it’s critical that clinicians are given the right information

to help detect signs in the early stages of MSCC.”

The card was produced by Susan Greenhalgh, consultant physiotherapist Bolton PCT, Jackie

Turnpenney, GMCCN AHP lead and Lena Richards, Clinical Specialist Physiotherapist at The

Christie . Lena said: “The 9,000 RED FLAG awareness credit cards have been distributed to every GP in

the network, physiotherapy and occupational therapy departments, walk-in centres, A&E departments and

GP Out Of Hours services in the North West”.

James Selfe, Professor of Physiotherapy at the University of Central Lancashire, concluded: “This is a great

example of an innovative healthcare project in the North-West. The scheme, which has been running since

December 2010, was commended as it was shortlisted at the Bolton Diamond Care Award, where just three

projects were short-listed from 27. A clear sign of how important it is.”

35

Metastatic Spinal Cord Compression

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