Changes to Community Stroke & Neuro-rehabilitation Services

Community Stroke &

Neuro-rehabilitation

Services

Engagement Report

January 2020

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Call: 01942 482711 or

Email: [email protected]

Contents

Section Page

Introduction 2

Service Information 3

How did we engage with people 4

Results of the survey 5

Conversations at Headway 6

Community Stroke Event 7

“You Said, We Listened”

Our response to the suggestions, concerns and feedback

10

Next steps 17

Page 1

Introduction

There are going to be some changes to the services for people who require neuro-

rehabilitation following discharge from hospital.

At the moment there are 3 different teams who would look after someone following a

stroke or brain injury:

1. The Community Stroke Team;

2. The Clinical Neuropsychology Team;

3. The Community Neuro-rehabilitation Team.

We’ve included some more information about the services on the next page.

Following a recent review led by the Greater Manchester Health and Social Care

Partnership we were asked to bring these service together (integrate them) and get them

working as one big team.

Between July and October 2019 we spoke to patients and residents about this change.

The purpose of our engagement work was to:

1. Share the plans for the services;

2. Gather feedback from patients around what they think would be good or if they have

any concerns;

3. Gather additional ideas for improvements we may not have thought of in our plans.

We used a mixture of face-to-face and online engagement activities to gather feedback.

Most of our activities was done via existing voluntary community sector groups who

support patients.

Page 2

Social media banner

Service information

Here we’ve provided some more information about the services involved in this change:

Community Neuro-rehabilitation Team

The Community Neuro-rehabilitation Team has been established for 25 years. It offers

specialist care to patients with all neurological conditions, including those that are

acquired, present from birth or progressive (one that worsens over time). Such conditions

include:

• Motor Neurone Disease (MND);

• Multiple Sclerosis (MS);

• Parkinson’s Disease (PD);

• Cerebral Palsy (CP);

• Muscular Dystrophies;

• Stroke.

Over time, the service has further developed its holistic approach utilising the skills of a

Community Matron in Neurosciences to offer long term support and case management

for complex progressive conditions.

Community Stroke Team

In 2007 the National Stroke Strategy was published. It described how we would have the

most effective specialist stroke services in the UK with more resources needed for early

post stroke management.

The Community Stroke Team was created to provide access to stroke services for all

patients discharged from hospital within a limited timeframe. Those patients with ongoing,

rehabilitation goals were referred to the Community Neuro-rehabilitation team who

offered a non time limited service and repeat access via self-referral for best practice

long term condition management.

Clinical Neuropsychology Team

The Clinical Neuropsychology service was put in place to provide intervention for patients

with an Acquired Brain Injury. This means brain damage caused by events after birth

rather than being born with it.

The three teams have different staff that provide specialist advice, support and/or Neuro-

rehabilitation for patients and families.

Page 3

How did we engage with

people We produced a leaflet and survey which we used to have conversations with people. The

information was also produced in an easy read format.

Face-to-face activities:

• We visited the Headway Support Group twice (July & August);

• We spoke to people at the Think Ahead Stroke Support Group;

• We worked in partnership with Healthwatch Wigan & Leigh, Stroke Association and

Think Ahead Stroke to hold a stroke event.

Online activities:

• We published the leaflet and survey on our website;

• We shared the information with the Greater Manchester Neurological Alliance;

• We published the information on our engagement newsletter and with patient groups

(+400 contacts);

• We posted about this regularly on our social media pages.

Our reach:

• We spoke to approximately 63 people in person;

• We had 12 responses to our online survey;

• Our social media posts reached over 2592 people with 95 direct engagements.

The Greater Manchester Neurological Alliance are set to launch a Café Neuro in the

Borough in 2020. We’ll help to promote the group and will engage with it’s members once

it’s set up.

Page 4

Results of the survey

There were 12 responses to the online survey in total.

Q. Who responded?

2 patients | 3 family members/carers | 4 members of staff | 3 other members of public.

Half said they had experience of being looked after by one of the teams.

Q. What did they think of our plan to bring the services together?

The majority thought our plans were good (10/12). 1 person thought the plan sounded bad

and 1 person wasn’t sure.

Q. What did they think would be good?

Lots of different comments here such as:

• Reducing waiting times & speeding things up;

• Better coordination and less patients would slip through the net;

• Better communication between the teams;

• It would be a better use of resources, networking and staff. Access to a neuro

psychologist would be excellent for people who have suffered a stroke;

• Being able to support patients/families for longer.

Q. What did they think would be bad?

Lots of different comments here such as:

• Concern about how the services would cope with a bigger remit and more patients to

see – would this actually lead to better waiting times;

• Concern from a member of staff about the change management process and potential

negative impact on staff. They wonder if this is a cost saving exercise;

• Concern about the place staff would be based and if they would have enough room.

Q. What else did they think we needed to improve?

• Psychology support for stroke survivors;

• Investment in staff;

• Not having a time limit on the support offered by the service to following through the

wellbeing of the patient;

• More active involvement with reactive service;

• Improve patient access to care and education;

• Incorporate checks for Dementia / Alzheimer's;

• More funding for appropriate equipment, instead of giving stroke patients elastic

bands, shoe laces, paperclips to practice with;

• Training and education for people caring for someone.

Page 5

Conversations at Headway

There was a real mixed bag of experiences reported to us by the people we spoke to at

the Headway Support Group.

One person had experienced issues accessing community services following a stroke a

number of years ago – the referral had been missed. The person got input from

community services following a second stroke and had praise for the Occupational

Therapist who acted as a coordinator for all the different services they needed. The

person also reported to get good input from the hospital consultant and could ring up and

get put on the clinic if needed.

Another person talked to us about their experience following a brain injury many years ago

now. The person felt that services need to encourage patients to engage with therapies

and different community groups to make as much progress as possible.

The people we spoke to at Headway were generally supportive of the plans to bring

together the three teams. They could see different benefits to this approach such as:

• Not having to tell their story over and over again;

• Better overall coordination of care and not having to contact different teams for

different things.

The things they thought we needed to improve:

• A more thorough initial assessment and better notes/records that can be shared

between staff so patients don’t have to keep telling their story;

• Making sure that referrals into the community team from hospital don’t get

overlooked;

• Giving people enough notice for appointments in the service;

• Using more digital (online) technology and things like text message reminders;

• People need to be pointed in the right direction when they leave hospital, they need

to be encouraged to engage with services and wider voluntary support;

• More support to help people re-familiarise themselves with their local area following

discharge from hospital if needed;

• It would be good if we could produce a “meet the team” board once the service

changes.

The only concern expressed via this group was the plans around implementing the change

to the service and making sure that no patients slip through the net.

Page 6

Community Stroke Event

It was fantastic to work in partnership with Healthwatch, Think Ahead Stroke and the

Stroke Association to plan the Community Stroke Event that took place on 20th

September 2019. The event was attended by patients, carers, staff and services who

had a common interest in the services and plenty of feedback on how we could improve

them. There was a number of presentations followed by table discussions and we’ve

summarised the notes below:

Q. What was important to you post discharge?

• To be independent and not reliant on family;

• As a family we wanted to be there;

• The gap between community stroke and neuro was too long and you can go

backwards;

• It was hard to change between the community stroke and neuro teams;

• Emotional impact and reassurance about the future;

• Information about wider support not directly after discharge but a little while after;

• Know where to go to get advice on employment, finances & driving;

• Better patient information;

• Someone to ask “what are you worried about”;

• Physiotherapy;

• Waiting times for home adaptations and equipment;

• Help and information following discharge from community teams;

• Understanding that therapy works towards an achievable goal;

• Being alive.

Page 7 Presentation at the Stroke event


Q. What support do you want in the community?

• More emotional & practical support for carers (e.g. respite, befriending);

• Face-to-face support to tackle loneliness;

• Access to transport / drivers;

• Better information and communication;

• Better access to physiotherapy;

• Training and support for carers on how to deal with stroke;

• Someone to look at the person holistically and not just the stroke – link in to other

services;

• More support around the emotional and mental aspect of having a stroke;

• Support to coordinate care and liaise with different agencies and services if

necessary.

Q. What works, what could be done better in terms of community

stroke services?

• Quicker access;

• Kind and supportive staff;

• More information on the stoke pathway and what to expect;

• More therapy services;

• People with electric scooters need more training;

• There are lots of things out there, people need to know how to access things and

the benefits;

• Contact someone within 24 hours of discharge and support someone beyond 6

weeks, this isn’t enough;

• Be clear who everyone in the service is, what they do and what they can help with;

• Share records/data between teams and services to help;

• More group therapy / support later on would help;

• Address the wait between different therapies;

• Better coordination of referral into community teams when you have been in a

hospital outside of the Borough.

Page 8


Q. What information do you know now that you would have liked post

discharge?

• More information on what to expect after having a stroke. Stroke happens in 30

seconds but can take years to recover;

• Trafford leaflet “ A Hero’s Journey” was useful – do we have something in Wigan

Borough;

• More help with benefits and form filling;

• More opportunities to meet inspiring stroke survivors to give hope;

• More money into stroke services;

• Basic information about “what will happen next”;

• Reactive solutions, e.g. rails and adaptations;

• Training for professionals and community around physiological impact of disability;

• More information on post-stroke seizures.

Some of the stalls at the event

Page 9


You Said We Listened – our response

1. There was concern about how

the service will cope with a

bigger remit and more patients to

see, will it actually be able to

deliver better waiting times? If so

how?

The service needs to recruit into many posts to support

the new model. Some roles have already been recruited

into which has allowed for a partial implementation

across the Wigan Borough. The staffing numbers have

been based on lots of information gathered about the

numbers of patients being supported by the service. We

will support quicker access for all disciplines within the

model once we are fully recruited to.

2. There was concern raised by a

member of staff around the

change management process

and potential impact on staff in

the service.

There has been staff engagement sessions to gain trust

and understand the new service and how teams will be

affected by the changes. From our engagement work we

understand staff are embracing the changes with a real

positive attitude and are excited by the launch of this

new service. The service has also established regular

supervision opportunities for clinical and managerial

staff.

3. Is this change a cost saving

exercise? People think more

money needs to go into the

services

There has been a considerable level of financial

investment to this new service, with workforce being the

largest investment needed. By joining teams together

the cost savings will be more about time to treatment,

access to the service, reducing fragmented patient

journeys between services and optimising the

opportunity for Inter-Disciplinary Team to deliver best

clinical practise work rather than financial savings.

4. Where will the team be based,

will there be enough room for

everyone?

The teams will eventually be co-located once they are

fully recruited into. Wherever the teams are located the

building will have adequate space and will be fit for

purpose.

There have been a number of suggestions and some concerns expressed during the

engagement work. We’ve reviewed this and put our response below:

Page 10



5. Can we improve mental

health support and

psychological input in the

service? This is a key area

people need help with

There is financial investment within the new model to have

neuro psychology input to patients as there hasn’t been this

offer routinely before. These posts are very specialised and

the provider is currently experiencing difficulties in

recruitment of these roles. We envisage that there will be

support available but there isn't at this time. Clinicians are

skilled in identifying individual need for supplementary

referrals and joint working with services such as Improving

Access to Psychological Therapies (IAPT) and Counselling

services.

6. There was concern that

this model will not work

unless there is investment in

staff

The majority of the investment is for recruitment of the

additional staff to allow the model to be successful. There

are workforce recruitment issues with Wigan are working

through as all across Greater Manchester localities are

recruiting from the same staff group. Locum cover may be

utilised whilst awaiting start dates for newly recruited staff.

7. Many patients fed back

that the 6 week limit on

services wasn’t appropriate,

some needed support after

this – will this go in the new

model?

People will be in the new service for as long as is required

to meet their goals, however, should they require further

support in their recovery journey they can self refer back

into the service. The Community Neuro Team has delivered

non time limited intervention, where active patient centred,

realistic goals are identified for all neurological conditions

for many years with patients successfully re-accessing the

service via self referral as is recognised to be required

when managing long term neurological conditions. Services

are currently developing improvements to services delivery

to ensure reduced need for transition between services for

stroke patients and no future gap in treatment.

8. Can we improve patient

information around the

service and simplify –

perhaps develop a “road

map”

We will work together with the relevant services to produce

a roadmap which we will test out with some of the support

groups before we publish it.

Page 11


Page 12


9. Will the service incorporate

checks for Dementia

/Alzheimer's?

Clinicians are experienced in supporting symptom

management of dementias related to neurological

conditions e.g. Fronto-temporal dementia, Lewy Body

Dementia. The comprehensive screening assessment

explores symptom presentation and clinicians can

identify services most appropriate to an individuals

needs, facilitating onward referral to additional specialist

services such as Later Life Adult Memory Service

(LLAMS) where required and in a timely manner for this

services criteria.

10. Will the service have

appropriate equipment to help

patients

The service doesn’t currently have appropriate

equipment to support patients, however some financial

investment has gone into the new model which will help.

Any requests for equipment support would be via the

integrated team who would work with equipment stores

if appropriate. Individual Funding Requests (IFRs) for

some specialist, bespoke clinical items, supported by

evidence based practise, are also completed by

clinicians to meet a unique need.

11. We had feedback from

carers that they would find it

helpful to get more education

and perhaps even training on

what to expect, how to care,

where to go for help.

Community Neuro and Stroke Teams regularly practise

family carer education sessions for individual patient and

carer need, to empower and optimise independent self

management. Education and advice sessions for

Personal Assistants and Homecare staff are also co-

ordinated and delivered. In the future, with additional

staff resource, it is planned to run groups sessions to

meet the needs of a diverse population of neurological

conditions e.g. symptom management sessions, carer

education sessions can be delivered within this as the

model is developed. Past pilot projects of Parkinsons

Disease symptom management education session and

exercise programme was well received and learning

points form this will be reflected on. Clinician education

input into the Think Ahead 6 week education programme

will also be continued.


12. Will there be any change

to the initial assessment –

there was suggestions this

should be more thorough

Community Neuro Team have an established practise of

completing a comprehensive initial assessment which has

been further revised to meet the needs of the integrated

model and will be adopted by all services as we work

towards integration, improving information sharing,

reducing duplication of information and time. This is

anticipated to be further supported by increased and

improved IT resources.

13. A few people mentioned

issues being referred into the

community teams following

discharge from hospital,

particularly out of the

Borough, is there an issue?

What can we do about it?

Communication between hospital and the community

teams should not form an issue as the Community teams

are a part of the local acute hospital and they will all have

access to the same IT systems in order to refer to the

appropriate teams. As all localities across Greater

Manchester are all implementing the new models to the

same specification, we would envisage some teething

problems initially as we may use different systems but all

localities will have a community model very similar to one

another, which will hopefully stop any of these issues and

barriers. Daily referral triage is completed by experienced

clinicians. As part of the service re-launch, in future,

education sessions will be delivered to Single Point of

Access referral management teams, GP practises, for

example, to update service knowledge and optimise

referral signposting.

14. What is the plan around

digital technology in the

service? E.g. does the

service use text appointment

reminders?

Services do not currently offer this as standard practise.

Due to the diversity and complexity of individuals

cognitive, communication, language needs this is on an

individual needs basis and small scale currently due to

resources and technology. The services work closely with

North West Assistive Technology and ACE Centre to

further support patients with communication deficit and

enhanced communication needs.

15. Could we produce a

“meet the team” board once

the service change happens

so everyone knows who

everyone is and what they

can help with

Once we’ve gone through the process of recruitment we

will produce a “meet the team” board. The Greater

Manchester Operational Delivery Network have created a

Neuro Rehab Services Patient and Carer info leaflet being

trialled and we plan to develop a local leaflet specific to

Wigan Borough specialist neurological services when the

model is fully integrated and implemented.


Page 13

“You Said, We Listened” You Said We Listened – our response

16. More support for people

with a brain injury to re-

familiarise themselves with

the local area when they get

home – is this something the

service does/will help with?

There are support/communication groups for both stroke

and neuro survivors that can provide support to help re-

familiarise people after a brain injury. Stroke Association,

Think Ahead and Headway are the lead contacts with

further support at a Greater Manchester level via the

Neurological Alliance.

At the point of initial assessment, and throughout onward

treatment, clinicians provide information pertinent to the

individual patient and family's needs, interests and local

community e.g. BASIC, Wigan MS Therapy Centre , local

Parkinson's UK group. The developing role of local

Community Link Workers is proving a positive new

additional resource to joint work with early in the patients

journey.

17. Do we have robust plans

in place to make sure

nobody slips through the net

whilst the service is

changing

As the engagement work has lasted a few months and has

been delivered via different forums, face to face, online,

surveys, support groups plus conversations at hospital,

community, local and Greater Manchester level, the team

would like to assure patients that they will do their utmost to

ensure that no patient is disadvantaged and has access

and awareness to the new service.

The Community Neuro Team have an established model of

self referral back into the service and close links with

neurologists and specialist nurses, ensuring ongoing

service awareness and access once a patient is known to

the service, meeting their needs with long term, some

progressive, neurological conditions. Newly established IDT

screening clinics with our Consultant in Neurological

Rehabilitation further enhances access to appropriate

services.

18. How do existing

Voluntary Sector groups fit

into the new model. How

can we better signpost

people to support out there

and the different groups?

VCSE have a place within the new model as they provide

services to support both stroke and neuro survivors and

their families. VCSE services are aware of the new model

and we would work with them as the new model is

implemented as this will take time to embed fully. The

“roadmap” we are going to produce should help people to

know what support is out there and how to access it.

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Page 15


19. People need help and

signposting to wider support

around employment, finance

and driving?

Clinicians have a specialist knowledge and skill set in

offering vocational rehabilitation and are increasing links

to services in this important and large specialist field e.g.

Working Well Early Help.

Signposting to services to support welfare rights is

provided as vocational, financial and social needs will

always be discussed where necessary. The integrated

Stroke and Neuro Service model is being developed in

consideration of all Wigan Integrated Community

Services (ICS) model initiatives and the service utilise

and integrate with services and resources as able. This

will be further enhanced with increased staff resource.

Clinicians are skilled in identifying potential barriers to

driving with a neurological condition, supporting this goal

within service where possible, and referring and working

with North West Driving Assessment Centre when

required.

20. A few people spoke to us

about physiotherapy, having

issues accessing or

experiencing long waits.

It would be fair to say that there have been lengthy

waiting lists for physiotherapy in the past, which are

currently being worked on and are improving.

Recruitment of extra therapists within the new model will

support the access times and diminish the long waits.

21. More information on what

to expect after a stroke, could

we look at Trafford “ A Hero’s

Journey” leaflet

The Greater Manchester Stroke Operational Delivery

Network developed ‘My Stroke Guide’ resource. Patients

should receive this when an inpatient on the Acute Stroke

Unit at the Royal Albert Edward Infirmary. However

patients currently accessing services through other

routes will not receive this booklet. A local additional

leaflet regarding services can be explored and developed

with future resources.


Page 16


22. More training and

awareness around the

psychological impact of a

disability

Clinicians currently offer relaxation and anxiety

management specific to an individuals needs. With future

successful recruitment to neuropsychology posts,

integrated enhanced psychological impact of disability

education can be identified and delivered by clinicians.

This new resource of clinical knowledge will be

disseminated within the IDT model of practise and also

be integral in the formation of future group education

session content also. Patient signposting to Counselling

and Improving Access to Psychological Therapies (IAPT)

services to meet this current need will also continue.

23. More information on post

stroke seizures

No current written information available, Stroke

Consultant offers clinical intervention and information at

post stroke reviews as required. In response the team will

raise this information request at Greater Manchester

Stroke Operational Delivery Network level to explore the

potential of increased information provision.

Next Steps

The results of our engagement work will help to inform the changes to the service. We

hope the responses we’ve provided above give you some assurance that we are listening

and will work on the areas that patients have told us are most important to them.

At this time the new service has partially been implemented due to the recruitment and

appointments of new staff members. Recruitment is still ongoing and we are making

some good progress by ensuring that we support our own staff with development

opportunities to progress within their service and this will support staff retention which in

the long term will give people of Wigan Borough continuity with their care.

It has been recognised that because of the partial implementation, the current waiting

lists and access times have decreased which has allowed patients to be seen in a more

timely manner. This can only further improve as more staff come on board once the

appropriate recruitment checks have been completed.

There are regular update meetings to the teams, commissioners and providers, with

action plans to expedite any potential delays to ensure delays to any aspect of the new

model are kept to an absolute minimum.

At this time due to ongoing recruitment, we would envisage that full implementation

should be completed by the end of March 2020.

If you’ve got any questions at all about this report or the change to the service please

don’t hesitate to get in touch:

Call: 01942 482711

Email: [email protected]

Write: FREEPOST RTRA-BXKR-CTTT, Shape Your NHS,

Wigan Borough CCG, Wigan Life Centre, Wigan WN1 1NJ

Website: healthierwigan.nhs.uk

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mailto:[email protected]

Changes to Community Stroke & Neuro-rehabilitation Services

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