contents · neurology service is good at connecting us with other services (e.g. physiotherapy)....

2

Contents

Executive Summary ............................................................................................. 3

Background ......................................................................................................... 5

About the Humber Acute Services Review ................................................................................................ 5

Specialty Reviews ...................................................................................................................................... 5

Methodology ....................................................................................................... 7

What was the format of the events? ........................................................................................................ 8

Where did the events take place? ............................................................................................................. 9

How were participants recruited? ........................................................................................................... 10

Who took part? ....................................................................................................................................... 10

Feedback on Individual Specialties .................................................................... 11

Cardiology ................................................................................................................................................ 13

Complex Rehabilitation ........................................................................................................................... 17

Critical Care ............................................................................................................................................. 19

Neurology ................................................................................................................................................ 22

Stroke ...................................................................................................................................................... 27

Feedback on Decision-making Criteria ............................................................... 31

Background .............................................................................................................................................. 31

Decision-making criteria .......................................................................................................................... 31

Feedback on the decision-making criteria .............................................................................................. 32

Decision-making criteria (refreshed) ....................................................................................................... 33

Key Themes and Next Steps ............................................................................... 34

Appendix 1 – typical agenda .............................................................................. 36

Appendix 2 – delegate pack ............................................................................... 37

3

Executive Summary

This report summarises the key findings from a series of patient focus group events carried out

to support the Humber Acute Services Review. The Humber Acute Services Review is a

collaborative review of acute hospital services across the five main hospital sites in the Humber

area – Diana Princess of Wales Hospital in Grimsby; Scunthorpe General Hospital; Goole and

District Hospital; Hull Royal Infirmary; and Castle Hill Hospital.

The events sought to gather the views and perspectives of people have used services in the

clinical specialities that have been the focus on the review since September 2018, including their

families and carers. The events were held in various locations across the Humber area,

specifically in Grimsby, Willerby, Goole, Hull and Scunthorpe. In addition, the team attended

three MS Society support groups to conduct further engagement to support the neurology

specialty review.

In addition, the Humber, Coast and Vale Health and Care Partnership is developing an ongoing

programme of engagement with people affected by cancer, their relatives and carers. This work

will be undertaken through the Cancer Alliance, which is the Partnership’s existing collaborative

programme for cancer.

A broad range of diverse feedback was provided by the participants at the events. A number of

key opportunities were identified by participants for developing and improving services in the

future. These can be summarised as follows:

Develop and support the workforce

Participants highlighted a number of opportunities to develop and make best use of the

workforce within our acute hospitals. These included: offering group appointments and ‘one-

stop shops’ to make best use of clinicians’ time; improving networking and cross-site working;

and providing more training to patients and carers to enable them to support themselves and

their loved ones better and help avoid crisis situations.

Give patients more information, knowledge and control

A common theme amongst participants was that they wanted more information about what

was happening in their care, how long they would have to wait and what to expect next in their

treatment. Participants sought more information about how to look after themselves and what

to do when they had worries or concerns.

Make better use of technology

Participants were keen to see that hospitals are making the most of technological innovations to

improve services and make the most of scare resources (especially workforce). Technological

solutions were put forward by participants as a way to overcome access challenges and

disparities of service between different areas.

4

Support patients to improve their wider wellbeing

In almost all groups, participants recognised the benefits of getting to know other people who

have had similar experiences. It is particularly important to those with long-term conditions,

progressive diseases and/or other disabilities to have access to wider services that can improve

their overall wellbeing that are not directly linked to the disease that they are being treated for.

Improve access to and equity of service

Travel and access issues were raised by many (though not all) participants. Many participants

recognised the need to travel, particularly for more specialist treatment, but were concerned

that this might make accessing treatment more difficult.

As proposals are developed for the future of services in the five specialties covered in this

report, these opportunities and suggestions should be taken into consideration wherever

possible.

5

Background

About the Humber Acute Services Review

Across the Humber area and beyond, local health and care organisations are working in

partnership to improve services for local people. We are working to find new ways of improving

the health and wellbeing of local people through transforming care and support in our

communities.

As part of this work, we are looking at how to provide the best possible hospital services for the

people of the Humber area and make the best use of the money, staff and buildings that are

available to us. This may include delivering some aspects of care outside of hospital altogether

to better meet the needs of local people.

As a group of health and care organisations we are working together to conduct a review of

acute hospital services across the five acute hospital sites in the Humber area, which are:

Diana Princess of Wales Hospital, Grimsby

Scunthorpe General Hospital

Goole and District Hospital

Hull Royal Infirmary

Castle Hill Hospital

The review will look at how best to organise the acute hospital services that are currently being

provided on the five hospital sites. The input of healthcare professionals, patients and the

public in the region is vitally important to the success of the review.

You can find out more about the review and keep up to date on its progress on our website:

www.humbercoastandvale.org.uk/humberacutereview

Specialty Reviews

Since late September 2018, the Humber Acute Services Review programme has focused on

reviewing six clinical specialties, using a clinically-led design approach.

The six specialties are:

cardiology

complex rehabilitation

critical care

neurology

stroke

haematology/oncology

http://www.humbercoastandvale.org.uk/humberacutereview

6

The clinical design process has involved bringing together doctors, nurses and other clinical

colleagues with commissioners and other key stakeholders to generate ideas about the best

possible ways to deliver services for their particular service area.

To support the clinical design process, a number of focus group discussions with current and

recent patients, their families, friends and carers, were undertaken to ensure the perspectives

of those who use the services are taken into account in the clinical design work. The themes and

feedback gathered through the focus group discussions have been shared with the clinical teams

considering the future of their services.

7

Methodology

The purpose of this engagement was to hear from recent and current patients, their families

and carers, who have used the services that are currently being reviewed. A series of

deliberative events were held where information about the Humber Acute Services Review was

shared with patients and discussions took place regarding how services could be improved in

the future.

The deliberative events covered five out of the six specialties that where clinical service reviews

are taking place (October 2018 to April 2019), which are:

cardiology

complex rehabilitation

critical care

neurology

stroke

The sixth service area where a specialty review has been initiated is haematology/oncology. At

the time this programme of engagement was undertaken, the specialty review for oncology was

still in the early planning stages and therefore it was not possible to incorporate the

engagement within the same programme. Additionally, the Partnership is developing an

ongoing programme of engagement with people affected by cancer, their relatives and carers,

through the Humber, Coast and Vale Cancer Alliance. In order to ensure a joined-up approach to

transformation in cancer services and engagement with the people who use cancer services,

engagement in relation to the oncology specialty review will be undertaken through the Cancer

Alliance.

8

What was the format of the events?

Each of the involvement events followed a similar format, with slight adaptations made based

on learning and feedback from earlier events.

The format included:

An overview of the Humber Acute Services Review

Presentations from lead clinicians explaining the opportunities and challenges in their

service

Facilitated group discussions following a SWOT analysis (strengths, weaknesses,

opportunities and threats) approach

Facilitated discussion on the decision-making criteria used within the review.

On some occasions, due to last-minute

staffing issues in the hospitals, the clinical

input was provided remotely, either via

live video link to the venue or through a

pre-recorded video.

Participants were encouraged to share,

from their experience, what is working

well and what is not working well in

current hospital services in the Humber

area. They were challenged to come up

with suggestions for how care could be

improved for patients in the future as well

as how to address some of the current

challenges within the services, such as

workforce shortages and performance

issues.

9

Where did the events take place?

In order to enable a range of patients, carers,

families and friends to contribute, a number of

events were planned across the Humber

area, close to the five existing hospital sites.

The sessions were organised to take place on

various different dates and times covering

the different specialty areas.

Where patients had to travel to another area

to attend, local CCGs supported this by

covering travel expenses and/or organising

transport if necessary.

In addition, the team were invited to attend

three MS Society support groups to conduct

further engagement to support the neurology specialty review.

Date Time Location Specialties Covered

Monday 28th

January

10am to 12noon The Pelham Suite, Grimsby Cardiology

Critical Care

Tuesday 29th

January

10am to 12noon The Mercure Hotel,

Willerby

Cardiology

Critical Care

Friday 15th

February

2-4pm The Courtyard,

Goole

Stroke

Neurology

Complex Rehab

Wednesday 6th

March

12noon to 2pm Hull Truck Theatre,

Hull

Stroke

Neurology

Complex Rehab

Thursday 7th

March

2-4pm Scunthorpe United,

Scunthorpe

Stroke

Neurology

Date Time Location Specialties Covered

Monday 18th

March

11am to 12noon Scunthorpe MS support

group

Neurology

Tuesday 26th

March

10am to 12noon Grimsby and Cleethorpes

MS support group

Neurology

Tuesday 26th

March

10am to 11.30am Hull and East Riding MS

support group

Neurology

https://www.mssociety.org.uk/

10

How were participants recruited?

Participants were invited to attend the involvement events by sending invitations with

information about the events to a range of support groups and local voluntary sector

organisations (e.g. British Heart Foundation, Castle Hill Cardiac Support Group, Headway

Humber, the Stroke Association and many others). In addition, the events were advertised in the

outpatient areas of local hospitals, via local media, social media and other existing patient

involvement groups and networks.

Who took part?

Over the course of the five events, a total of 70 people attended and took part in the focus

group discussions (not including organisers, clinicians and facilitators).

In addition, 49 people took part in focus group discussions hosted by the MS Society at their

meetings in Grimsby, Scunthorpe and Hull.

Only around half of those who attended events completed an equalities monitoring form and

therefore some of the demographic information on attendees in incomplete. From the

information that is available, participants ranged in age from 38 to 79 and were of roughly equal

proportions of male and female participants (54% female, 44% male, 1% non-binary).

Of the 65 who pre-registered online and did attend the workshops, they were interested in the

following specialties:

Cardiology only = 25

Critical care only = 1

Cardiology and critical care = 7

Stroke only = 10

Neurology only = 15

Stroke, neurology and complex rehab = 6

Neurology and complex rehab = 1

Participants came to events from across the Humber region and many did travel to an event that

was in a different CCG area to the one where they live.

11

Feedback on Individual Specialties

The majority of the meeting time was dedicated to a facilitated discussion about the clinical

services under review. Participants were given some key background information in their packs

to support the discussion (see appendix 2). The focus of the conversation was on participants’

own experiences and their views and ideas for improving services.

Trained facilitators were available on each table. They took participants through a SWOT analysis

to identify strengths, weaknesses, opportunities and threats in relation to existing services in

each of the clinical areas covered by the event.

Strengths

What has been good about your experiences

of neurology services?

Weaknesses

What has been not so good about your

experiences of neurology services?

Opportunities

What would make you happier if it were

available or done differently?

Threats

What would you not want to see changed?

12

Participants were encouraged to move tables if they wanted to contribute to more than one

specialty discussion.

The aims of the session were:

To draw out what matters most to patients (and carers);

Gather their views on what is not working and might need to change;

To discuss ideas about what might work better – specifically in the context of the

challenges identified by the clinical leads in their presentations (written information and

infographics were also shared on the tables).

The feedback, comments and ideas were recorded by the facilitators and participants

themselves and then collated by the review team.

This report has been compiled by analysing the feedback across all sessions and grouping the

information by theme. The information has also been reviewed by the Humber Acute Services

Review Citizen’s Panel. The Citizen’s Panel is a group of up to 20 independent citizens from

across the Humber area, representing various geographical areas and bringing a range of

perspectives to discussions. The group acts independently to provide critique, support and

advice to ensure the views of patients and the public are considered in the review.

Cardiology

13

“It’s free

and it saved

my life”

“workforce with

ethos to deliver

quality patient

care”

“supportive

staff”

“I am a worrier:

ask heart club

organiser”

Cardiology

Positive things about current services

Participants highlighted a number of important strengths of existing cardiology services within

the Humber area. These can be grouped around three key themes:

Positive outcomes from treatment

Most importantly of all, participants reported positive

outcomes from treatment. Some of the positive comments

include:

People receive treatment and get better.

Lives are being saved.

It was successful surgery.

Speed of transfer to cath lab in an emergency.

It’s free and it saved my life.

Positive experience of care

Most (not all) participants also reported that their

experience of care was positive.

Everybody was marvellous.

Nursing staff spent 30 mins explaining.

Supportive staff.

Treatment good once in hospital.

Standardisation of end of life care planning helped me.

Good support pre and post hospital stay

Another strength that was highlighted by many participants was the benefit of having support

from others before and after their hospital stay. This included the benefits people felt from

engaging with peer support groups, exercise classes and other aftercare opportunities.

Some of the positive comments include:

Peer support really helped – it was good to speak to

someone who had already been through the same thing.

Aftercare and exercise classes helped recovery and

boosted confidence.

Good experience of community cardiology service

(Grimsby).

Cardiology

14

“I was like a rabbit

in the headlights: I

couldn’t take it in”

“The patient

doesn’t know

the path”

“My life was on

hold for 18

months”

Issues that need to be addressed

Participants described aspects of their care that were poor or areas where improvements could

be made. These can be grouped around two key themes:

Ineffective communication

Many of the negative experiences encountered by the patients who participated in the focus

groups was linked to a breakdown in communication – either between different parts of the

health and care system or between healthcare providers and them as patients. Ineffective

communications often led patients to worry more about their condition and what was

happening with their care.

Some of the comments made include:

Patients don’t know what comes next and are

afraid to ask because they know the doctors and

nurses are too busy.

Being sent home whilst waiting also added to

stress.

The experience of being in hospital with

someone who is seriously ill is very stressful; it

makes it much more difficult to take in the information that is

being given.

It wasn’t clear to me [the patient] how aftercare helped in the

recovery journey.

Not being able to see records/share with other care providers is a problem.

The path to getting care from the right person takes time – the patient doesn’t know the

path.

Delays and/or waiting

Another key theme when discussing weaknesses of existing services was the experience of

having to wait, either for treatment or for information. Many participants commented on the

impact of waiting on their own stress levels and described feelings of anxiety caused by waiting

and often not knowing what they were waiting for or how long they would have to wait.


Waiting for the letter was stressful – feeling of

powerlessness and not being in control.

Had to wait eight days in hospital before operation

(due to bed allocation).

Long waits between diagnosis and treatment or

between scan and getting results.

I daren’t miss a letter.

Operations were cancelled.

Cardiology

15

“Empower and

support me to

look after myself

when I go home”

“Treat the

person not

the illness”

Ideas for change and improving services

Participants were asked to come up with suggestions about how services could be improved in

the future. Some of the ideas put forward include:

Empower the patient

Patients want more information and to have a better understanding of where they are in ‘the

system’ and what will happen to them next.

Empower and support me to look after myself when I

go home – patient needs to feel cared for throughout.

Produce a flow chart for the patient to help them to

understand their present stage of recovery and what

to expect next – we need more information about

what to expect when.

More honest communications and discuss prognosis.

Promote support groups.

Involve families/carers.

Regular follow-up appointments, a number/named person to call

for reassurance when not sure about what to do.

Better use of IT/digital solutions

Currently too much reliance on traditional model e.g. outpatient clinics to give results.

Make use of digital technology to support patients with long-term conditions.

Promote diagnostic testing in the community to avoid hospital visits.

Improve record and information sharing (including prescriptions).

Improve access to care

Find ways to make services more accessible (including through better technology).

Improve bus services.

Care closer to home but transparency about which services might be centralised.

Happy to travel for best place for specialist treatment but concerned about transport.

Cardiology

16

“Will there

be job

losses?”

“Keep existing

services

locally“

Things people don’t want to see change

A number of things were highlighted that patients and their families/carers want to see

safeguarded in any future changes as they are important to them. These included:

Quality of service

Don’t want to see a reduction in quality of services and

access to skilled doctors.

Loss of existing staff – don’t want this to get worse.

Don’t want to see staff being pulled across to other sites

to cover gaps or vacancies in rotas.

Concerns about access

Do not move cardiac services at Castle Hill – it is amazing.

Keep the existing services locally.

Happy to travel for best place for specialist treatment but

concerned about transport.

Public transport links to hospital are good – not necessarily the

same for GP practices or other “community locations”.

Complex Rehabilitation

17

“…but only

if you can

access it”


Complex rehabilitation services look after a relatively small number of patients and therefore

only a few of the attendees at the events contributed to the discussions on complex rehab

services.


Quality of care

Neuro rehab centre at Goole is fantastic.

Once in the service, it is second to none.

Great staff

Staff across both sites are brilliant.

They [the clinical staff] are very hard to replicate. Patients and their relatives understand

the challenges around recruitment.


Access to appropriate service

Many challenges faced accessing service – it can be very

difficult to get a bed.

Limited community offer or discharge options after rehab.

Need ongoing rehab services (at home/in community) to

maintain skills and build confidence and independence after

discharge from complex rehab service.

Funding pathways are complex and don’t always make it

easy for the service to be joined up.

“The service

is second to

none…”


18

“Develop and

upskill staff to

maintain

workforce”

“Do not reduce

staffing levels

any further”




Strengthen community support

Strengthen community-based provision – link with the ‘Living with’ programme.

Develop the support networks on discharge, whilst in rehab, to build relationships and

confidence with the individual and families.

Develop the workforce

The issue of workforce was discussed extensively and

participants made some suggestions to improve the

workforce situation:

Develop and upskill staff to maintain workforce.

Potential to develop a holistic staffing approach

and have a cross section that are generalists so

patients can be seen by one clinician rather than having many visits from different

specialists.


Staffing

The key issue highlighted where people did not want to see

change was in relation to the staffing levels, which were viewed

as precarious already. Patients wanted to be reassured that

rehab specialists would still be available in the future design of

services.

Critical Care

19

“The best

quality care

you can get”

“Dedicated and

professional

staff”

Critical Care


Participants highlighted a number of important strengths of existing cardiology services within

the Humber area. These can be grouped around two key themes:

Positive experience of care

Participants talked about their positive experiences of care.


Castle Hill intensive care service is good.

The best quality care you can get.

Good support for relatives and carers.

When it works, it’s great.

Great staff

Another strength that was highlighted by many participants was the

quality of staff providing the services. Some of the positive

comments include:

Staff were professional and very dedicated.

Great strength of specialty staff.

It is good to have advanced practitioners in critical care.

Critical Care

20

“Staff members were

always on the phone

asking ‘how do we

cover tomorrow’s

demand?’”

”

“Capital is

needed to bring

units up to

speed”

“What will

change when

I step down?”



be made. These can be grouped around three key themes:

Capacity issues

Participants were very aware of the limited capacity

within critical care and in some cases this impacted on

their experience of care. Some of the comments made

include:

Ward pressures due to number of beds.

Cancellations [of treatment] due to bed shortages.

Patients in beds because social care is not in place

yet – coordination between health and social care

could be improved.

I was left alone in a room with only electronic

monitoring equipment within 12 hours of operation.


Communication was an area highlighted for improvement by many participants. Some of the

comments made include:

Communication is an area where there is room for

improvement.

Would like better communication for patients and

families about what to expect next – what will happen

when I “step down”? I don’t understand the

terminology used.

Communication between consultants (especially

regarding medication) was not good.

Facilities and access

A number of the issues highlighted related to the physical environment and difficulties accessing

the service. Some of the comments made include:

Quality of units in Grimsby is not good enough –

need colocation of HU/HDU.

Capital needed to bring units up to speed – should

have best quality environment for the service.

HRI parking and travel issues.

Car parking charges.

Critical Care

21

“Need positive

culture and

workforce

retention”

“Opportunity

to bring units

together”

“Don’t train

staff then

lose them”




Support recruitment and retention of staff

The issue participants discussed most extensively was how

to improve recruitment and retention of staff within

critical care services in the Humber. Suggestions included:

Need positive culture to support workforce retention.

Incentivise to retain staff.

Improve networking and cross-site working.

Contractual stipulations with a minimum stay (2-5 years).

Promote individual training to boost progression and retention.

Promote new Grimsby staff residences to help attract people to

the area.

Involve patients and carers more

Carers should be recognised as expert partners.

More promotion of emotional support services for relatives and patients.

Improve clinical communication with patients about what care they need at the various

stages of their journey.

Technology

Embrace technology – improve ease of access to information for patients.

Digital technology creates opportunities to share skills and expertise between staff.

Computer system to have red flags for vulnerable patients – so don’t need to explain

issues every time.




Availability of resources

Don’t train staff then lose them.

Concerned about units not being able to progress with

improvements due to lack of capital funding.


Don’t want services to move from Hull to Grimsby (or vice versa).

Keep services local where possible and limit risky transfers to those absolutely necessary.

Neurology

22

“I can ring if I need

advice between

appointments”

“Neurologist can

open doors to

other services”

“I always feel

listened to”

Neurology


Responsive services

One positive aspect that was highlighted by a number of the patients who contributed to

discussions about neurology services was the way in which services responded to their changing

needs. For example, clinicians arranged home visits if needed or followed up with a letter or

summary email to ensure the individual didn’t forget important information.

Being listened to and things being actioned.

Respiratory nurse did home visits.

Castle Hill Parkinson’s service – all round hard-

working, obliging and good communication.

Goole hospital is well equipped to deal with

families on a personal level. We are always kept

up to date. It is a small hospital, friendly and warm.

Having gone many years without care (in 1980s/90s), I now have

nothing but praise for the service – when was seriously ill,

clinicians did home visits and enabled recovery.

Skype appointment with rehab team in Sheffield was great.

High quality care

A number of services and individual clinicians were praised for the excellent service that they

provide.

The Brigg rehab team provides exceptional care (this team was mentioned by participants

at both sessions that took place in Scunthorpe and the session in Goole).

MS care in Hull is excellent – good to have MS expertise at Hull (from Scunthorpe patients).

MS nurses in Scunthorpe and Grimsby – we are really glad they are now in place.

Having a neurologist in NLaG has been a real positive.

We don’t mind travelling to Hull from where we live in Cleethorpes if we get good

treatment.

Multidisciplinary care

A number of participants highlighted the way in which neurology

services worked with a broad range of other health and care

professionals to provide holistic support.

Care is more joined up between care providers.

Brigg rehab provided by a multidisciplinary team.

Supportive networking clinically between Hull and NLaG.

Getting access to advice from a dietician was helpful [for father with Parkinson’s].

Neurology service is good at connecting us with other services (e.g. physiotherapy).

Neurology

23

“You begin to get

the feeling that

people are passing

the buck”

“I’m thinking

about

moving GP”

“The doctor

didn’t know

us”


Participants talked about aspects of their care that were not good enough or where they felt

improvements could be made.


Communication challenges and some gaps that still exist between different parts of the health

and care system are impacting on some patients’ experiences of care.

Nobody gets back to you.

My address wasn’t updated on the system and

so I missed an appointment letter.

Links with GPs are poor – lack of information

with poor signposting; GPs don’t know where

to refer to neurology services.

No transparency around when and where

check-ups will take place.

Clinical staff need to appreciate patients and families are in a

strange environment – more tact and support would be better.

There are lots of locums and frequent changeover of staff.

Delays and/or lack of capacity

Waiting times and lack of capacity were also raised as concerns. Some of the comments include:

Procedure was cancelled three times and condition (MND) deteriorated in the meantime.

Long waiting times – if you don’t push you can fall off the system.

Appointments with MS nurses (Hull) meant to be every six months but actually every year.

Lack of neurology beds.

Boundary and access issues

In some of the discussions, the issue of commissioning and/or provider boundaries came up.

Where an individual lives in one Local Authority area but is registered with a GP in a different

CCG area, they often come up against difficulties accessing services, even when they are

recommended by their acute clinicians. Other access issues were also mentioned:

If you have not been seen for more than 12 months, you have to

be re-referred by your GP. You feel like you are wasting your

GP’s time just to get another referral.

There was some confusion amongst patient groups about the

links between the Hull and NLaG services – some patients on the

South Bank were under a Hull clinician, others saw a neurologist

at NLaG and there is a lack of clarity about why this is the case.

No parking when you get there.

Inequity of provision between different geographical areas – I can’t access the service my

consultant recommended to me because I live in the wrong CCG.

Neurology

24

“I’d like to have

one number to

ring where

someone can give

me advice”


There were lots of suggestions made about how to improve services to make them more

responsive and meet the needs of patients in the Humber area better.

Single point of contact

Patients want to have access to advice and guidance when they need it, rather than having to

wait what can be a long time for a check-up appointment. In general, they feel able to care for

themselves/their relatives but sometimes have questions or their condition might flare up and

they would like advice from a specialist without having to

go through their GP.

Several participants described their experience from

other areas where they benefitted from seeing an

MS nurse twice a year. The nurse coordinated their

care, sign-posted to relevant places for support and

was available on the phone for advice and could

arrange an appointment with the consultant if

necessary.

Would like a helpline to call if worried or need

advice – would be happy for this to be part of a Humber-wide service.

Better use of IT/digital solutions

Offer outpatient appointments via Skype. This could be linked to local monitoring using

other technology/wearables so that consultant could also measure things like balance

remotely and only call patients in for face-to-face appointments when necessary.

A single care record accessible to all those involved in patients’ care (this is especially

important for patients with long-term conditions that can flare up – information needs to

be available to staff in A&E including who to contact for further information).

A central care plan that everyone can see, including GPs, neurologists, therapists and

patients themselves.

Educate staff by harnessing technology to support learning across sectors and specialisms.

Neurology

25

“Provide more

training for carers

and families”

“Offer group

appointments”

“Want to

see equity of

service”

Making best use of workforce

Many participants made suggestions about how to make best use of the specialist workforce

within neurology. Suggestions included:

Make every appointment count – provide more

information to patients in advance of appointments

so that time with clinicians is well spent.

Offer group clinics/group appointments for advice

and guidance (also helps build peer support).

Separate planned and urgent care so urgent care

doesn’t crowd out planned surgery and lead to

cancellations.

Use healthcare assistants (HCAs) or lower band nurses to do

home visits under supervision of consultant/specialist nurses to

reduce need for patients to travel and prioritise consultants’

time for those who need it most.

Trusts to link up better to provide high quality services across a range of specialisms.

Specialist neurology support/advice available to A&E staff when required.

Neurologist to provide ‘in-reach’ into other acute wards.

Enable more self-care – e.g. simple way to get antibiotics for a water infection without

being sent to A&E; more information about managing our condition.

Support for broader needs

Some participants told us that their lives would be better if they could access broader wellbeing

services more easily.

We need support with accessing benefits (e.g. Personal Independence Payments).

Would like more hands-on physiotherapy.

Can we get support to have broader needs met (e.g. can we make the local leisure centre

more accessible – currently it has no disabled parking).

Would like support for mental health and wellbeing.

More support for carers (including their mental health and wellbeing).

Improve access for all

Want to see equity of service – why do some go to Hull and

others Grimsby?

Flexibility over appointment times (not 9am for someone with

a neurological condition who is a wheelchair user).

Home visits when too ill to travel.

Clinics all in one place/time to reduce travel (requires better

coordination across departments).

Neurology

26

“Don’t want to

see services

diluted“

“Keep home

visits”




Quality of service

Don’t want to see a reduction in staff – especially the

new MS nurses in Grimsby and Scunthorpe.

Don’t want to see services diluted.

Continue to listen and talk to patients.

Is there higher mortality at weekends due to lower

staffing levels?


Please keep home visits when these are needed.

The ability to ring and leave a message is really good – they

always call back. Please keep this up.

Access to neurology consultant at Scunthorpe has been beneficial

to my son.

Travelling to Grimsby is ok if needs be, but it is good to see Dr

Lazarus at Scunthorpe.

Stroke

27

“Reactive staff

acted quickly on

admission”

” “Dedicated,

lovely staff”

Stroke


Participants highlighted a number of important strengths of existing stroke services. These can

be grouped around two key themes:

Effective, joined-up services

Participants talked about some of their positive experiences of stroke care. They highlighted the

ways in which services responded quickly to need and how they were well connected across

hospital, GP and community services.


Met by stroke coordinator when I came in by

ambulance and was immediately assessed and

scanned.

Good connections with other specialties – cardiologist

carried on support into the stroke pathway.

Liaison with community staff was good.

Early supported discharge in Hull and East Riding supported by the

stroke team.

Early rehab – I was pushed by the therapist in hospital even though I

didn’t want to; this had a positive result in the end.

Support from GPs after a stroke was excellent.

Peer support

The availability of peer support and access to clubs for stroke survivors was also highlighted as a

positive aspect of peoples’ experiences.

Stroke

28

“One size

doesn’t fit all”

“Not everyone

gets the stroke

information pack”

“Information

on website is

outdated”



be made. These can be grouped around three key themes:


Many of the issues patients experience stem from communication that is not effective either

between different departments and organisations or with patients and their families and carers.


When people are discharged not everyone gets the

stoke information pack and it is not updated.

Medication was given to a patient that was harmful,

which could have potentially been prevented by

care staff and clinicians communicating better.

Need to manage communication between voluntary

and community sector and health professionals

better in order to maximise support available.

Not found anyone who can communicate effectively with

someone with hearing difficulties (speak slowly and clearly).

Hospital refused to tell relatives what the after-care plan is post

discharge.

Attitudes of some staff

Some of the negative experiences that patients discussed related to attitudes, knowledge

and/or training of staff working within stroke services and also in other health and care services

that are not specialists in stroke.


Attitude of community physios was patronising and showed a lack of trust.

Staff don’t understand the challenges e.g. only being able to

use one hand.

No recognition or understanding of stroke when having

appointments with other specialties.

One size fits all approach to stroke patients in problematic:

what works for one patient might not work for another.

Bad news was delivered in a very matter of fact and uncaring way.

Rehab should be tailored – don’t put people where other patients can’t speak as it doesn’t

encourage speech.

Lack of capacity and inequity in provision

Don’t have enough scanners.

There is not enough community physiotherapy available.

Lower level of support and rehab available in some CCG areas compared with others.

Stroke

29

“Mobile scanners

could reduce

waiting times”

“I felt alone – need

more psychological

support”

“Promote

‘Let’s Talk’ as

standard”




Care that is more proactive and holistic

Participants discussed ways to improve patients’ recovery after a stroke and highlighted the

importance of support for mental as well as physical

health.

Provide holistic support, including support for

mental health and wellbeing.

Ensure patients have relevant knowledge e.g.

importance of continuing rehab.

Link people up with stroke survivor groups for

peer support.

More monitoring to prevent secondary stroke.

Would like to talk to someone after treatment (about post-

treatment worries).

Training and awareness-raising

Provide stroke awareness training to care home staff.

Train staff at HRI so that they can refer to voluntary groups and other peer support as

standard.

More information about signs and symptoms, including familial factors.

Improve access

Hold clinics in GP surgeries (they are more relaxed

and closer to home).

Mobile scanners could reduce waiting times.

Better parking and improved transport links.

Quick access to follow-ups.

Stroke

30

“Don’t move

everything to the

North Bank”




Quality of care (especially staff)

Excellent nurses who know how to deal with a patient – please don’t change.

Front door services from the paramedics and access to stroke coordinator at first point of

contact.

High focus on dignity throughout hospital stay.


Don’t move everything to the North Bank

Worried about further reductions in funding and

impact on services in the future.

Decision-making criteria

31

Feedback on Decision-making Criteria

Background

During the sessions, we also asked participants for their feedback on the decision-making

criteria that have been developed to guide decisions that will be made later on in the review

process. The decision-making criteria were set at the beginning of the review process by the

review steering group in discussion with key stakeholders, which included clinicians, local NHS

leaders and local authority representatives.

The criteria are there to help decision-makers to understand and therefore take account of the

various trade-offs that are presented by different scenarios or proposals for change.

The purpose of discussing them with the patients and carers who attended the workshops was

to gather their feedback on which things are most important to them as people using services,

so decision-makers are aware of this when making decisions about future service models.

Specifically, participants were asked to read through the criteria. They were asked to discuss

whether the questions posed were the right ones when thinking about future service models;

whether any important criteria were missing; and whether there were any areas where further

clarification would be helpful.



32

Feedback on the decision-making criteria

Participants discussed the decision-making criteria and made a number of suggestions regarding

the content and terminology used. These can be summarised as follows:

Role of carers and families

Many participants highlighted the need to include carers, families and those who provide the

wider support network for patients in considerations regarding access, transport and experience

of care. They highlighted the importance of having family and friends around when undergoing

treatment and the role this plays in an individuals’ recovery.

Why ‘acceptable’ standards?

Another issue that was raised often in discussions was the choice of the term “acceptable” in

relation to clinical outcomes, standards of access and performance against waiting times.

Participants were surprised at what they saw as the bar being set at “acceptable” for the various

standards and challenged why partners are not striving for the best possible standards when

reviewing services and proposing changes.

What about parking?

Transport and access were discussed by most groups and participants shared stories about the

challenges they have faced in terms of physically getting to appointments and accessing

treatment and care. Often the access issues were not linked to the overall distance to travel, but

with things that affect the experience of travelling and ability to access care when arriving at the

venue.

For example:

Is it easy to find a car parking space when you arrive and will it be anywhere near the

venue for your appointment?

Does the venue have a bus shelter with comfortable seats and information about the

wait times for the next service?

If you are taking a poorly relative to an appointment, is there somewhere you can drop

them off and someone you can leave them with while you go and park the car if they

are not well enough to get themselves to where they need to go?

Participants were almost unanimous in their views that all of these access issues should be

considered when looking at transport and access, not just overall distances between sites.

Use of language

The final theme that was raised in most, if not all, of the discussions about the decision-making

criteria was that overall they were difficult to understand and they used language and/or

terminology that was not meaningful to patients and service-users.


33

Decision-making criteria (refreshed)

In response to the concerns raised about the language used in the decision-making criteria and

to support broader engagement as the review progresses, an additional set of questions has

been devised to describe the decision-making criteria. It is hoped the refreshed questions are

easier to understand with a range of audiences yet still capture the essence of the criteria that

have been agreed as the aims of this review. The criteria have been re-written with the help of

the Citizen’s Panel, taking on board the feedback from the engagement events as outlined

above.

These refreshed criteria will be used in conjunction with (not in place of) the questions set out

on page 31. They have been developed to ensure those looking at proposals for future service

models (including patients, carers and members of the public) are able to clearly identify the

impact of those models on each of the areas identified within the decision-making criteria for

the benefit of decision-makers who ultimately have to take all of the available evidence into

account when making a decision on the future of acute hospital services in the Humber region.

The following alternative wording has been devised by the Citizen’s Panel:

Key Themes

34

Key Themes and Next Steps

It is important to note that there was a broad range of diverse feedback given from participants

over the course of the eight events and, therefore, it is difficult to summarise everything said

without losing the richness of the feedback.

Nevertheless, it is possible to identify some areas that were identified by the patients and carers

who took part as opportunities for developing and improving services. These should, wherever

possible, be taken into consideration when undertaking the next stage of the review and

developing proposals for the future of these specialities.

1. Develop and support the workforce

Participants in the focus groups highlighted a number of opportunities to develop and make

best use of the workforce within our acute hospitals.

Opportunities identified include:

Offer group appointments and ‘one-stop-shops’ to make best use of clinicians’ time;

Do more to promote the area as a positive place to live and work;

Improve networking and cross-site working to provide peer-support for staff in similar

roles;

Provide higher level training to patients and carers to enable them to support

themselves and their loved ones better and help avoid crisis situations.

2. Give patients more information, knowledge and control

A common theme amongst participants was that they wanted more information about what

was happening in their care, how long they would have to wait and what to expect next in their

treatment.

In order to improve the experience of patients and their families and to enable them to look

after themselves better, a number of opportunities exist, such as:

Develop simple and easy to understand guides for patients that explain treatment

pathways and what to expect when;

Communicate to patients where they are in the queue and how long they should expect

to wait;

Provide support, training and permission for patients and their families to look after

themselves and manage their condition (with the option for responsive advice and

support when needed).

Key Themes

35

3. Make better use of technology

Participants were keen to see that hospitals are making the most of technological innovations to

improve services and make the most of scare resources (especially workforce). Technological

solutions were put forward by participants as a way to overcome access challenges and

disparities of service between different areas and support those in remote rural locations.

Suggestions for how to develop services through technology include:

Make shared care records available to all those involved in a patients’ care (including the

individual) as standard;

Support better cross-site working through the use of technology;

Enable video consultations to improve access;

Invest in wearables and other technology to improve remote monitoring and make

services more responsive to need.

4. Support patients to improve their wider wellbeing

In almost all groups, participants recognised the benefits of getting to know other people who

have had similar experiences. It is particularly important to those with long-term conditions,

progressive diseases and/or other disabilities to have access to wider services that can improve

their overall wellbeing that are not directly linked to the primary condition that they are being

treated for.

Opportunities to improve services were identified, which include:

Ensuring those providing acute services are aware of, and are actively linking patients

with, support groups and other activities/sources of support in their community;

Working with local authorities and wider health partners to improve the accessibility of

leisure services and other wellbeing support services.

5. Improve access to and equity of service

Travel and access issues were raised by many (though not all) participants. Many participants

recognised the need to travel, particularly for more specialist treatment, but were concerned

(often on behalf of other patients) that this might make accessing treatment more difficult.

Many participants noted that there are opportunities to improve the experience if they do have

to travel:

Make it easier to park and/or drop off loved ones more easily;

Consolidate appointments to reduce frequency of travel;

Enable more remote monitoring and video consultations;

Make sure patients from all geographical areas can access the same services as their

neighbours.

36

Appendix 1 – typical agenda

Humber, Coast and Vale Health and Care Partnership Patient Focus Group – Stroke and Neurology

Iron Bar Room, Scunthorpe United 7th March 2019, 2.00pm to 4.00pm

Time Item Led by

10 mins

Intro to the Humber Acute Services Review and

expectations for the session

- short intro video to explain review

- set expectations for the session

Linsay Cunningham

5 mins

Clinical Overview – Stroke

- reasons for service review

- key challenges/opportunities

Dr Ali

5 mins

Clinical Overview – Neurology

- reasons for service review

- key challenges/opportunities

Dr Lazarus

60 mins

Table-top exercise: What’s good/what’s not so good?

- semi-structured listening exercise

- aim of session to draw out what matters most to

patients (and carers) and also views on what is

not working and might need to change

- understanding the impact of any changes on

patients; carers and families

Table facilitators

15 mins

Table-top exercise: Decision-making criteria

- overview of DM criteria

- do we need any further clarification of these?

- have we missed anything out?

Table facilitators

5 mins Thank you and wrap up Linsay Cunningham

37

Appendix 2 – delegate pack

The following information was provided to those who participated in the

workshops to support the discussions:

Relevant specialty information leaflets - cardiology - complex rehabilitation - critical care - neurology - stroke

‘Case for change’ infographics (which describe the challenges facing the health and care system locally) - quality of care - healthcare is changing - workforce - finance

Evaluation form

Equalities monitoring form

Photo consent form

These documents are all available to view on the Humber Acute Services Review

website: www.humbercoastandvale.org.uk/humberacutereview

https://humbercoastandvale.org.uk/wp-content/uploads/2019/04/Cardiology-patient-leaflet.pdf

https://humbercoastandvale.org.uk/wp-content/uploads/2019/04/Complex-rehab-patient-leaflet.pdf

https://humbercoastandvale.org.uk/wp-content/uploads/2019/04/Critical-Care-patient-leaflet.pdf

https://humbercoastandvale.org.uk/wp-content/uploads/2019/04/Neurology-leaflet.pdf

https://humbercoastandvale.org.uk/wp-content/uploads/2019/04/Stroke-patient-leaflet.pdf

https://humbercoastandvale.org.uk/wp-content/uploads/2019/04/Challenge-1-300dpi.png




http://www.humbercoastandvale.org.uk/humberacutereview

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