Annual Report 2012

The British Association for

Paediatric Nephrology Founded 1972

The British Association for Paediatric Nephrology

Founded 1972

Annual Report 2010

2

12

Dr Jane Tizard

Welcome to the 2012-13 Annual

Report of the British Association for

Paediatric Nephrology (BAPN). The

BAPN was formed in 1972 and is the

specialist society for paediatric

nephrology. Its aims are

Welcome from the president

• To set and to improve the standard of medical care of children with renal disease.

• To formulate and express opinions on policy concerning the care of

children with renal disease. • To conduct clinical and scientific meetings in order to advance the

knowledge and skills of doctors with responsibility for children with renal disease.

• To conduct collaborative research and audit, and to disseminate

results. • To consider the training, continuing education and professional

development of paediatricians with responsibility for children with renal disease.

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The British Association for Paediatric Nephrology

Founded 1972

Annual Report 2010

President’s Report

It was a great privilege to be able to take on the role of President of the British Association for Paediatric Nephrology (BAPN) in June 2012. Firstly, I would like to thank Mary McGraw who provided such excellent leadership of the BAPN over the past 3 years and I will endeavour to maintain her very high standards. It has been a busy few months but I am thoroughly enjoining the challenge so far. As BAPN President I am a Trustee of the Renal Association and a member of the RA executive committee and The Renal Registry Management Board. Within the first few months of this role I have felt tremendous support from the other Trustees and members of these committees as they listen to and consider the needs of children with renal disease at every opportunity and I am very grateful for this. The BAPN executive meets quarterly and reports to the BAPN at the RA annual meeting and at our winter meeting which combines a business meeting with clinical, academic and clinical services updates. We aim to raise the quality of care for children with renal disease in a variety of areas summarised in this report.

One of the current challenges for us is the new commissioning arrangements for specialised services. Over the past year I have represented Paediatric Nephrology on the Paediatric Medicine Clinical Reference Group developing an agreed service scope and specification. It is an opportunity to define the best model of service to try and deliver the optimal care to our patients. We hope to build on the work on Paediatric Nephrology networks that Mary McGraw undertook and to develop more comprehensive commissioning of the whole patient pathway. Dal Hothi, our clinical services lead, has started work with the BAPN membership in some of these areas. There are many who have contributed to the work of the BAPN and I would like to thank all those who have represented the Association over the past year and the members of the BAPN executive committee for their support over my first few months in office. I would also particularly like to thank Sally Feather who as Honorary Secretary continues to ensure that the BAPN runs efficiently and whose knowledge of the BAPN has been invaluable.

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Secretary’s report

Dr Sally Feather

I have just begun my three year term of office as BAPN secretary following the BAPN AGM in June 2010, following in the very able footsteps of Jane Tizard. I am sure we would all like to extend our thanks to Jane for all her hard work.

In 2010, the BAPN has joined forces with the Renal Association so now we have the support of the MCI secretariat and I would like to thank them for supporting some of the administrative roles of the BAPN secretary post.

This year, following a postal vote, the membership has agreed to alter the BAPN constitution as follows: The Association will be a Division of the Renal Association, adult nephrologists will be included as members, the chair of the Medicines for Children Research Network Clinical Study Group will serve on the executive committee for the duration of their tenure, an annual subscription is to be paid to the Renal Association, and a restricted fund of the Renal Association entitled BAPN exists for donations and is managed by the BAPN.

Finally the membership agreed to appoint a lay member to the executive committee for 3 years. I am pleased to announce that following the decision applications were organised and Mr Shahid Muhammed has been appointed as lay member to BAPN executive. We look forward to working with him.

We are now using a monthly eNews format in order to inform BAPN members of news items and hope this is proving useful!

We welcomed the following new members to the BAPN in 2010:

Dr Deepa Athavale, Nephrology Grid Trainee, Manchester Dr Mark Bradbury, Consultant Paediatric Nephrologist, Manchester Dr Michelle Hamilton-Ayres, Consultant Paediatrician, Cheltenham General Hospital Dr Daljit Hothi, Consultant Paediatric Nephrologist, Great Ormond Street Hospital Dr Lyda Jadresic, Consultant Paediatrician, Gloucestershire Royal Hospital Dr Guy Millman, Consultant Paediatrician, York Hospital Dr Ben Obi, Consultant Paediatrician, Royal Surrey County Hospital Dr Stephen Wadams, Consultant Paediatrician, Poole Hospital

Secretary’s Report

Dr Sally Feather

I began my three year term of office as BAPN secretary following the BAPN AGM in June 2010.

In 2010, the BAPN joined forces with the Renal Association so now we have the support of the MCI secretariat and I would like to thank them for their continuing support for some of the administrative roles of the BAPN secretary post.

Changes to the constitution The BAPN Executive Committee propose that changes to the BAPN constitution can be made at AGM or business meeting by 2/3 majority without 50% of membership being present (providing changes to the constitution are in the agenda circulated prior to the meeting). The reasons for this are that 50% of membership are rarely present at meetings, voting is expensive and there is often a poor response rate. An electronic survey will be sent to change the method of passing resolutions.

Finally I would like to welcome to the following new members; Dean Wallace Helen Stannard Adam Sambo Wen Yi Ding David Broodbank Jon Jim King Mark Bradbury

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Treasurer’s report

Dr Judith van der Voort

As Treasurer my roles in 2010 were:

Transition of our financial affairs becoming part of the Renal Association

I had discussions with the treasurer of the RA and the following changes were agreed when joining

the RA: the membership fees would be paid directly to the RA of which we would automatically

become a member. The RA would provide £4000 yearly to fund our executive expenses and a yearly

donation of £750 to the Kidney Alliance would be made. A fee of £30 was agreed for the new SPIN

membership. The monies from the BAPN account were ring-fenced within the RA accounts for our

own use. A yearly financial statement of the BAPN monies has and will be provided by the treasurer

at the Annual General Meeting.

Payments from our ring-fenced accounts

I liaise with the project managers of the RA secretariat, to action payments from our ring-fenced

account. After joining the RA the BAPN had £34,249.40, a one off payment of £3000 was made for

the MCRN CSG Nephrology. We supported some non-executive travel expenses totalling £119.05.

This left the BAPN ring-fenced account with £31,130.35.

BAPN membership

This year we have seen the change from being BAPN members to being members of both BAPN and

RA, as well as an increase in our membership numbers with many trainees and paediatricians with

expertise and interest in nephrology joining. I am the first port of call for potential new members

and have produced an information leaflet to facilitate the process. We are in the process of

reviewing the joining procedure.

Member of Executive Committee

On the quarterly executive committee meetings I provide the committee with an up-to-date

summary of our finances. All members contribute to the discussions around the agenda items and to

further planning and decision making of BAPN affairs.

The British Association for Paediatric Nephrology

Founded 1972

Annual Report 2010

Treasurer’s Report

Dr Judith van der Voort

BAPN at start of 2012: £30,094.35 Total expenditure for 2012: £4,070.00 BAPN Balance at end of 2012: £26,024.35 BAPN expenses covered by the RA: £3088.08 Total expenditure: £3419.40 VAT reclaimed: £331.32 • Voting: £1237.20

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Audit and Registry Committee

Chair : Dr Manish Sinha

Registry

In 2012 the UK Paediatric Audit and Registry Subcommittee comprised of seven members: Carol Inward, Catherine O’Brien, Heather Maxwell, Yincent Tse, Malcolm Lewis, Manish Sinha (Chair) and Sheetal Bhojani (Trainee Representative). UKRR colleagues assigned to paediatric projects include Rishi Pruthi (Registry Registrar), Anna Casula (Statistician), Fiona Braddon (Bioinformatics) and support from Shaun Mannings and Matthew Brealey (Data Processing).

The Committee met four times (January, May, July, and September 2012). There was an attempt to perform the July meeting using “Skype” facilities which was partially successful! There were two further teleconferences in July and August 2012.

Two chapters published in the annual

report from the UKRR [14th Annual

Report for data 2010].

We also continue to actively collaborate with the ERA-EDTA registry contributing with data and for reports from the European Registry.

Tony Wing Award – project details to be found on the Renal Association website.

Key achievements in 2012:

1. The completion of the new Paediatric Renal Dataset- submitted to the UKRR in November.

2. Nine of 13 centres submitted data returns for 2011 electronically.

3. Data returned from the UKRR to all centres for checking.

4. Push to improve the process of data collection and improve involvement by UKRR and centres.

5. Two papers published in NDT and four papers presented at national/ international meetings.

Data for anaemia audit and re-audit of renal biopsy project near completion.

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Research Secretary’s Report

Dr Richard Coward and

Dr Sally Hulton

Renal Association Meeting 2013- 13th to the 15th of March

Joint paediatric- adult plenary session on recurrent FSGS has been finalised. Nick Webb (paediatric clinical aspects), Moin Saleem (advances in basic science) and Chas Newstead (adult recurrent disease) will be speaking .

RCPCH meeting, Glasgow 2013

-This will be a joint session with PICU -We are thinking of having at least some

of it as CME focused with SPIN involvement.

-Need to think of a headline speaker. -Intend to award 2 trainee presentation

prizes -(have also secured Rheumatology as

our 2014 partner) Trainee Bursaries

Three travel bursaries of £500 were awarded this year to Lindsey Keir, Hitesh Prajapati and Helen Jones. Next year we will limit the award to £1200, split between the best submissions to give more flexibility.

CSG activities: we are setting up specialist subgroups in the CSG with other co-opted members in order to be more responsive to industry feasibility studies.

Current multicentre studies recruiting are:

1. PREDNOS 2. PREDNOS2 became active on the 1st

Of October and needs to start recruiting by the end of March 2013

3. RADAR – SRNS and MPGN

Funded studies in setup are:

1. HotKids; 2. Rituximab in NS

In addition, several industry funded studies are recruiting at selected centres (see CSG minutes).

CSG Membership – members are requested to consider rotating their membership to another colleague from their respective centre in order to fulfil the remit of fixed terms for CSG membership.

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CSAC Report

Chair: Dr Maggie Fitzpatrick

The paediatric nephrology CSAC is a committee of the RCPCH whose role is to advise on aspects of specialist training relating to paediatric nephrology. The CSAC updated the curriculum in 2011 and the updated version is now on the RCPCH website for all trainees, potential trainees, clinical and educational supervisors to access.

The CSAC meets 4 times a year. The CSAC has the following members - the Chair, 2 Training Advisors (currently 3 as 1 post is shared between 2 people), the President and Secretary of the BAPN, a General Paediatrician with a Special Interest in Nephrology (SPIN consultant paediatrician), a Trainee Representative, a member of the adult renal SAC and a representative from the RCPCH. There have been a number of new appointments to the committee over past year - Dr Jane Tizard has replaced Dr Mary McGraw as President of the BAPN, Dr Sheetal Bhojani replaced Dr Wesley Hayes as trainee representative, Dr Munir Ahmed replaced Dr Peter Houtman as the general paediatrician with a lead for SPIN and Drs Sally Hulton and Richard Coward replaced Dr Moin Saleem as joint research secretaries for the BAPN. Dr Mooney has just completed his term as the representative from the adult renal SAC and we are awaiting a replacement for that position.

CSAC Report

Chair: Dr Maggie Fitzpatrick

The paediatric nephrology CSAC is a committee of the RCPCH whose role is to advise on aspects of specialist training relating to paediatric nephrology. The CSAC is currently actively involved in curriculum development and advising on the appropriate assessments for level 3 trainees.

The CSAC has met four times over the past 12 months. It has nine members comprising of the chair, two training advisors, the president and secretary of the BAPN, a general paediatrician with a special interest in nephrology (SPIN consultant paediatrician), a trainee representative, a member of the adult renal SAC and a representative from the RCPCH. There were two new appointments to this committee over past year who both took up posts in September 2010 - Dr Kay Tyerman replacing Dr Sally Hulton as specialty training advisor and Dr Helen Jones replacing Dr Hugh McCarthy as trainee representative.

NTN Grid appointments

NTN Grid process 2010 – there were 11 applicants to the grid, 6 were short-listed and 4 were made offers and accepted training posts in London (2) to rotate between GOS and the Evelina, the West Midlands (Birmingham Children’s Hospital ) and West Scotland ( RHSC Glasgow ). The process for the NTN grid for 2011 is now underway.

Current Trainees

Total number of current trainees is 12:

• 2 in locum consultant paediatric nephrology posts

• 1 in locum PICU clinical fellow post (appointed as a paediatric nephrologist Feb 2011 Canada – due to take up post later this year)

• 4 engaged in research

• 4 in clinical practice

• 1 on maternity leave

There were 2 trainee educational meetings in 2010 – Glasgow/January and London (Evelina )/July. So far there has been 1 trainee educational meeting in 2011 - Manchester/January 2011. All meetings were well attended and positive feedback was received.

NTN Grid process

The 2012/13 grid process is now complete and 5 trainees have been appointed.

Current trainees;

• 9 trainees o 6 in clinical posts - 1 in

Toronto o 2 trainees in research (1

post CCT) o 1 OPE (educational course)

There were 2 trainee educational meetings in 2012, January 2012 at the ICH and July 2012 in Newcastle. Both meetings were well attended and feedback was positive. On both occasions members of the CSAC met up with the trainees individually to assess more formally their current progress, any training issues and aspirations for future development. Feedback following these meeting was sent to the individual trainees for their records.

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CSAC Report (cont.)

Trainees are now working actively with the CSAC group regarding the development of paediatric renal guidelines building on established guidelines from adult renal care on the Renal Association Website. There are now designated lead paediatric nephrologists identified who are working with trainees to progress these.

There was one substantive consultant paediatric nephrology appointment in 2012 – Dr Helen Jones at the Evelina Hospital in London. There were 2 locum consultant posts appointed - one in Bristol and one, Dr Clothier at Evelina, which was a new post. The CSAC/BAPN continues to update our information regarding future consultant retirements for optimal workforce planning.

The curriculum section in ‘The Framework for competencies for level 3 training in Paediatric Nephrology’ on the RCPCH website has been updated and amended by the CSAC. The document has been forwarded to the RCPCH training committee for approval and is now on the RCPCH website.

The Framework of competencies for level 3 training SSM in Paediatric Nephrology directed at potential SPIN doctors is on the RCPCH website – modules are now being taken up and CSAC has had a number of interested enquiries. CSAC will need to work with the RCPCH to develop a framework to manage and monitor this process.

START has now been ratified by the GMC and the date of the first assessment has been confirmed for November 2012. The RCPCH will run 2 assessments for 2012/13 in November 2012 and March 2013. The cost for the trainee is now £250. A working group for our specialty has been convened by Dr Kerecuk which has now submitted a comprehensive number of scenarios directed at paediatric nephrology trainees to be used as part of these assessments.

The CSAC will need to continue to generate new scenarios covering acute based scenarios, chronic based scenarios, critical appraisal, handover / prioritisation, safe prescribing, safeguarding, teaching, leadership and management, ethics confidentiality and the law, conflict and risk management and logistics. We do not have any trainees currently signed up for this round of START.

The British Association for Paediatric Nephrology

Founded 1972

Annual Report 2010

10

Clinical Guideline and

Standards Committee

Chair: Dr David Milford

As chairman of the clinical guidelines and standards subcommittee I would normally serve a three year term of office. The committee comprises the Chairman, The Chair of the Registry Committee, the BAPN Communications Officer, two representatives of the membership, a trainee representative and a co-opted member of the Clinical Services Subcommittee. My duties include chairing committee meetings as needed, providing a link to the Renal Association Clinical Practice Guidelines Committee, overseeing development of standards and guidelines for all aspects of nephrology and reviewing externally produced documents when requested by the BAPN Executive. Completed items to date NICE Clinical Outcomes

Framework indicator set Feb 2012

NICE Health Care Quality Standards Process Guide

Feb 2012

NICE Clinical Guideline Manual

Apr 2012

NICE CKD scope June 2012 NICE Methods of Technology

Appraisal July 2012

NICE Quality Standards in UTI Oct 2012 NICE Management of

hyperphosphataemia Nov 2012

DH UK plan for rare renal disease

Apr 2012

Patient information leaflets: Jan Dudley secured BKPA funding for this 2 year project and David Milford, Andy Lunn and Lyda Jadresic are working with her. AKI: David Milford and Lyda Jadresic representing BAPN, available for stakeholder comments March.

Clinical Guidelines and Standards Subcommittee

Dr David Milford

As chairman of clinical guidelines and standards subcommittee

I serve a three year term of office. The committee comprises

the Chairman, The Chair of the Registry Committee, the BAPN

Communications Officer, two representatives of the

membership, a trainee representative and a co-opted member

of the Clinical Services Subcommittee. My duties include

chairing at least two committee meetings each year, providing

a link to the Renal Association Clinical Practice Guidelines

Committee, overseeing development of standards and guidelines for all aspects of nephrology and

reviewing externally produced documents when requested by the BAPN Executive.

Completed items to date

Care plans: these documents were developed by NHS Kidney Care but were not published. They

cover dialysis, transplantation and chronic renal failure and have been converted into Word files and

placed on the BAPN website for members to download and edit to suit local needs.

Patient reported outcome measures for haemodialysis, peritoneal dialysis and transplantation: these

documents are published and are on the BAPN website. Individual units are encouraged to use

these tools to measure the quality of their service as assessed by patients.

Standards for renal biopsy: renal biopsy standards for audit were approved by the subcommittee

and have now been placed on the BAPN website.

Unit assessments: the document will be circulated to the membership of the committee again so

that the document can be finalised and published on the BAPN website. The committee agreed that

the document is valuable and should be used by units to assess their service.

Responses to consultation

NICE scoping workshop on immunosuppressant therapy for the treatment of renal transplantation in

children (review of TA99): Leah Krischock and Meeta Mallik attended the scoping workshop.

NICE Anaemia management: Committee comments collated and forwarded to RCPCH.

NICE Quality standards on CKD: This was a document for the adult services but it was agreed that a

similar document could be valuable for paediatric patients.

EMA consultation: concept paper on the need for guidance on the clinical investigation of medicinal

products to slow the progression of renal insufficiency.

UK NSC consultation on screening for glomerulonephritis

Nephrology Networks: comments on document under development by the BAPN

Ongoing work Development of standards and guidelines to match RA topics: This is a task the BAPN hoped to achieve a number of years ago. It is hoped that a renewed effort to identify small groups of clinicians willing to take on this important work will be more fruitful. The BAPN had agreed to provide funding to support authors however, following an initial promising collaboration with the RCPCH, it was felt the resource proposed would be inadequate. The Executive Committee consequently suspended the collaboration pending further discussion. Following discussion with Andrew Lewington, and with support from David Wheeler, it was agreed that paediatric authors should work with their adult counterparts to develop guidance that covered adults and children. This was felt to be advantageous on many levels. Andrew Lewington has called a meeting of the Renal Association Clinical Practice Guidelines Committee at the RA/BTS meeting in March and it is hoped this will be an opportunity for adult and paediatric authors to meet and plan development of guidance.

The list of topics and proposed authors are: Haemodialysis – Daljit Hoti Peritoneal dialysis – Chris Reid Peritoneal access – Carol Inward, Meeta Mallik Assessment of potential kidney transplant recipient – Jan Dudley Anaemia management in CKD – Jonathan Evans CKD mineral and bone disorders – Rukshana Shroff Post-op care of the kidney transplant recipient – Heather Maxwell

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Clinical Services Committee

Chair: Dr Daljit Hothi

A) Workforce document • Workforce document 2012 completed • Individual doctors job-plans and retirement

dates are being held centrally by the executive committee

• A summary of projected retirement numbers and locations will be posted on the BAPN website

B) Renal Services Specification • A revised proposal for the National Renal

Services Specification has been drafted and submitted by Jane Tizard

C) Civil Eyes • Negotiated a review of renal transplant services

and pathways across the country • This project is being conducted free of charge • Three transplant services will be reviewed:

Bristol, Leeds, GOSH • Hope that final report will summarise • individual unit service delivery specifications • transition pathways • degree of development of local networks • commissioning arrangements across the three

centres • similarities and differences in practices

D) Transition Services • Recognition that most if not all centres

across the country have started work on developing transition pathways

• Vital component of present and future service delivery arrangements

• I have started to summarise a report of local transition specifications and pathways

E) National Paediatric Nephrology Transition Arrangements

• Nationally most units have good / excellent transition arrangements with adult colleagues for CKD and transplant patients

• Transition arrangements for dialysis patients are less well structured or established

F) Sub-committees

Paediatric Nephrology Clinical Networks Key Objectives • review and critically appraise existing

models of managed clinical networks within other specialities and identify those that may work with paediatric nephrology

• review and critique existing models within nephrology

• identify ideal and realistic commissioning arrangements strategies to take clinical networks forward

Paediatric Nephrology Quality Indicators Key Objectives

• develop specific, measurable, achievable, relevant and time specific clinical, organisational and patient experience quality indictors across paediatric nephrology services

• indicators must have clear definitions of the population, time-frame and specific goals to be measured

• ideally indicator is able to identify process-outcome relationship

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Ordinary Member’s Report

Dr Mohan Shenoy

I have recently commenced in the

post and attended my first BAPN

executive committee meeting in

November 2012.

As BAPN representative to Kidney Alliance I have attended the AGM and

other regular teleconference meetings of this group. I have also

represented KA at paediatric specific policy events. I have also

commented on a number of government documents.

Finally as BAPN representative to KA, I have been seconded to the

organising committee for World Kidney Day to help organise a

Parliamentary Reception sponsored by KA.

The British Association for Paediatric Nephrology

Founded 1972

Annual Report 2010

13

SPIN Representative’s Report

Dr Munir Ahmed

I took over as Specialist Paediatrician

with an Interest in Nephrology (SPIN)

representative to BAPN in March 2012. I

represent SPIN doctors on CSAC

committee of RCPCH for Paediatric

Nephrology and attend the BAPN

meetings.

SPIN Members As of 29th of September 2012 there are 29 members registered with BAPN as SPIN members. These members qualify for a discounted membership and enjoy all the privileges of BAPN. SPIN Trainees There are 12 doctors in Paediatric training who wish to qualify with a special interest in Nephrology. SPIN Advice I have provided career advice to a few doctors across the deaneries regarding opportunities in Paediatric Nephrology. A few queries were also responded about the curriculum requirement of graduating with SPIN label. SPIN Trainee Survey The survey looked at the awareness among SPIN trainees about job opportunities and their satisfaction about their training. The results were presented to the winter meeting of BAPN at Birmingham SPIN Consultant Survey This survey was done to assess the current combined outreach nephrology clinics being held. The results have been fed into Nephrology network group who recently met at Nottingham.

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Trainee Representative’s

Report

Dr Sheetal Bhojani

Trainee Report 2013

1) Currently there are 8 trainees

in the nephrology grid

programme

2) Three trainees got CCT in

2012

3) Two trainees due to CCT in

2013

4) Five new trainees have been

appointed and are due to

start grid training in 2013

5) There are 2 grid trainee

meetings per year. In 2013,

we have had 1 meeting in

February in Birmingham. The

next meeting is in London on

13th and 14th of June.

The British Association for Paediatric Nephrology

Founded 1972

Annual Report 2010

15

Communications Officer’s

Report

Dr Andrew Lunn

I have recently commenced this

post and want to start by thanking

my predecessor Leah Krischock for

all the hard work she has done

during her time in the role and for

her on-going help and support as I

try and resolve the inevitable

technical issues.

My main role is maintaining and

updating the BAPN website. I am

continuing the work that Leah has

done in exploring how we can

improve the functionality and

maintenance of the website. As

part of this we are exploring the

possibility of integrating more with

the Renal Association website.

My role also includes meeting as a

member of the infoKID steering

committee. InfoKID is a group,

supported by the BAPN, which is

developing a patient / parent

information website specifically for

children with kidney disease. This

is entering an exciting phase as the

website is nearing its launch date

later this year.

BAPN

British Association for Paediatric Nephrology www.bapn.org

• To set and to improve the standard of medical care of children with renal disease.

• To formulate and express opinions on policy concerning the care of children with renal disease.

• To conduct clinical and scientific meetings in order to advance the knowledge and skills of doctors with responsibility for children with renal disease.

• To conduct collaborative research and audit and to disseminate results.

• To consider the training, continuing education and professional development of paediatricians with responsibility for children with renal disease.