Greater Manchester Neuro-Rehabilitation Operational Delivery Network

Setting the Standards for Greater Manchester Neuro-Rehabilitation Services

8th September 2016

A record of the event

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Welcome Rebecca Patel, patient and community engagement manager from the GM Service Transformation Unit1 opened the evening by explaining the purpose of the event: to discuss the GM neuro-rehabilitation service2 and part of the ongoing engagement and exchanges between the service and people who use the service.

Rebecca explained:  we have listened to what people said was wrong with the service during events in March 2016, as well as ongoing feedback and have considered how the service could change to meet people’s needs  we want to share those proposals with you to check we are on the right track  we would like you to help us set the standards for the service – what you and other people that use the service, expect from the service – you are the experts, we value your wealth of experience of the service  the event will begin with an overview of what the service is like now, followed by our proposals for the inpatient and community neuro-rehabilitation services. After that we will break-out into small groups to find out what you think of the proposals and hear from you about what the standards of the service should be

1

Further details about the GM Service Transformation Unit are available at www.transformationunitgm.nhs.uk

2

Further details about the GM Neuro-Rehabilitation Network are available at www.gmnrodn.org.uk

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GM Neuro-Rehabilitation Services Event: 8 September 2016

The Service Now and the Problems: Dr Fayez Morcos, Clinical Lead for the GM Neuro-Rehabilitation Network Slide 1: Dr Morcos re-iterated the purpose of the event

Dr Morcos provide examples of events that mean people may need to access neuro-rehabilitation services, for example a brain injury from an accident or a person with a progressive neurological condition living at home and deteriorating. People may receive the rehabilitation in the community from the community neuro-rehabilitation service or in a hospital/facility such as those in Greater Manchester: -

the acute service at Salford Royal Hospital

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one of the four post-acute services at Floyd Unit (Rochdale), Devonshire Unit (Stockport), Taylor Unit (leigh infirmary) and Ward 3 at Trafford General Hospital.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

The map of GM demonstrates where the 5 inpatient services are.

The map of GM shows the areas of GM without a community neuro-rehabilitation service (those areas highlighted with a box)

Dr Morcos described how people may move through the GM neuro-rehabilitation service, as well as the challenges faced by the current service – as listed in the slide. One of the key challenges was identified as ensuring people are in the right place at the right time in order to receive the right care.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Dr Morcos illustrated the patient pathway by describing two cases. The first, a patient who had a good experience of the service - a gentleman in his fifties who received rehabilitation in the Floyd unit, had a trial period living in the Floyd unit flat with his wife, prior to going home and accessing timely rehabilitation from community services.

As national standards for managing patients with a tracheostomy and/or low awareness have been developed, we have identified that the post-acute units are not meeting the standards. The standards describe the minimum number of patients that a service should look after in order for staff to maintain skills, expertise and competencies. The number of patients with a tracheostomy and/or low awareness who require the post-acute service in GM is quite small, which means that we need to care for this group of patients in one setting to maintain those skills, expertise and achieve the standards. The second case was of a gentleman in his fifties who had a tracheostomy and low awareness and due to these two factors mentioned above, he was not able to access the post-acute services and instead was transferred to a private unit to undergo rehabilitation

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Proposal for the inpatient service: Dr Fayez Morcos Dr Morcos explained that NHS England had established the GM Neuro-Rehabilitation Operational Delivery Network (ODN) to address the challenges described in the next slide. The work of the ODN is overseen by a Board which includes senior clinicians and managers from all the organisations in GM that provide neurorehabilitation, as well as patients, commissioners and a local authority representative.

Dr Morcos showed this slide to demonstrate how the ODN working groups report to the Board.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Dr Morcos gave a brief description of each of the working groups.

Dr Morcos explained that one of the proposals to improve the GM neuro-rehab inpatient service was to have one central waiting list for accessing the beds and to offer the first available bed to a patient – even though this may not be their local service.

Dr Morcos explained that the inpatient service is not meeting the nationally recommended staffing levels; impacting the intensity of therapy people can receive, as well as discharge planning. Standards are being developed for the information that is available to patients and families, as a lack of information currently available has been highlighted by patients and families.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

The service review group was formed in 2015 to review the inpatient service and recommend the most appropriate configuration of the service..

The service review group proposed one service for patients with prolonged disorder of consciousness and/or tracheostomy (in the post-acute setting) and for this service to be at Salford Royal where the expertise for caring for these groups of patients. The proposal is create a pathway for these patients to go to Salford Royal.

The following questions were posed to Dr Morcos: Q: Will centralising the service make it difficult for families to travel?

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GM Neuro-Rehabilitation Services Event: 8 September 2016

A: Yes, people may have to travel further to visit their loved ones, but we need to centralise the service in order to meet standards. When we posed the centralisation of the post-acute service for patients with tracheostomy and/or prolonged disorder of consciousness to patients and families in March 2016, almost everyone said they would be happy to travel to Salford Royal if it meant they were receiving the expert care that they would need. Q: Where do people with challenging behaviour go in your system? A: First of all, there is a spectrum of challenging behaviour. Severe challenging behaviour is rare but people with severe challenging behaviour are classed as such if they are hitting people, persistently trying to leave the service etc.. Like people with tracheostomy, we need to concentrate people with severe challenging behaviour so that they can access specialists and specialist services. The proposal would be for people with severe challenging behaviour to access a specialist rehabilitation service led by neuro-psychiatrists. Q: Where will that severe challenging behaviour service be? Will it be inpatient? A: Yes, inpatient. It is currently provided by the independent sector. Q: I have concerns about the proposed severe challenging behaviour service – that you are planning to put people in an institute. A: Perhaps I didn’t explain it very well; Severe Challenging behaviour usually happens at an early stage after a brain injury and people will likely recover. It is therefore a rehabilitation service and whilst it would be led by neuro-psychiatry, the team would include neuropsychology, other therapists, nurses and neuro-rehabilitation medicine. The proposal was worked up with a neuro-psychiatrist, several neuro-psychologists in GM, neuro-rehabilitation consultants, nurses and therapists. I should emphasise that people with severe challenging behaviours will only be in the facility on a temporary basis, with the team supporting the person to recover and move on to home or another rehabilitation facility. Q: Who falls into the slow-progression category? A: There tend to be three categories of people who need neuro-rehabilitation: i) Some people improve quite quickly and may then go home with further support from community neuro-rehabilitation services. ii) Some people are really impaired and do not progress and need nursing care in a facility (e.g. a nursing home) or at home.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

iii) Some people continue to improve but that improvement may take a long time, sometimes 1-2 years to slowly build up function. This group of patients is the ‘slowstream’ or ‘slow-progression’ category. Q: This is a perfect opportunity to push neuro-rehabilitation up the national agenda? Are you trying to raise the profile of neuro-rehabilitation nationally? A: We are mainly working with Greater Manchester colleagues, but have links to Northwick Park hospital in London; links in the North West (Liverpool, Preston, Stoke) and Birmingham; links with the BSRM and the Royal College of Physicians; links with the GM neurological alliance and other societies. I agree that we need real involvement and particularly want to listen to people’s experience of the service.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Proposal for the community neuro-rehabilitation service: Ashleigh Knowles

Ashleigh explained that the ODN had been tasked with creating a model and specification for community neuro-rehabilitation services and the presentation explains the proposal that community neurorehabilitation clinicians have come up with.

Ashleigh described accessing the service in brief.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

In this and the following slide, Ashleigh described the principles of the service.

Ashleigh emphasized the need for the service to commence treatment in timely manner and for discharge to be timely; to eliminate the post-code lottery that is evident in the current service; to understand the impact of disability of people’s life-plan and to work the patients and families to set goals that are important to the patient and families.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Ashleigh described the service operating hours and who is eligible for the service.

Ashleigh described the rehabilitation process within the community neuro-rehabilitation service.

The following questions were posed to Ashleigh: Q: For people with MND, self-referral doesn’t always work as people don’t always know or recognise when they are deteriorating. For progressive or palliative conditions should people stay ‘on the books’ (i.e. in the service) and be reviewed? A: The difficulty for clinicians is that if a person is ‘on the books’ clinicians have a duty of care. It would need to be up to individual teams whether to keep people on their books or not. Q: I’m from Bolton and we used to have a service that Ashleigh described, but we no longer have this. Services that were promised are no longer available and the teams don’t have the staff that they need. A: the model being proposed advocates specialist triage so that appropriate people are accessing the service. Most community neuro-rehabilitation teams have a third of the staff that Page 13 of 22

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GM Neuro-Rehabilitation Services Event: 8 September 2016

they need – the new specification includes staffing levels which will be proposed to commissioners. Q: How do we sell this model to commissioners? Rebecca Patel enquired whether the audience had heard of Devo-Manc and explained that Devo-Manc means that it’s up to the people in Manchester to decide what’s best for Manchester, including specialist services like neuro-rehabilitation. Deb Troops, Greater Manchester Neurological Alliance, stated that they were worried that CCGs don’t take brain injury seriously and asked how can the people in the room work together to get the service described. How do we move neuro-rehabilitation up the agenda? Rebecca Patel pledged to report what has been said at tonight’s event to the Joint Commissioning Board for Greater Manchester and explain why neuro-rehabilitation is important. Rebecca also explained that neuro-rehabilitation has been identified as a priority for Greater Manchester which involves looking at the standards for the service, patient outcomes and removing variation across GM. Deb Troops stated that neuro-rehabilitation needs to stop been seen as a big expense and be seen as value for money. Julie Cunningham from North Manchester CCG, explained that N. Manchester CCG is one of the three areas in GM without a community neuro-rehabilitation team and the CCG is in the process of doing a case for change to take to the N. Manchester CCG Board, the proposal being to introduce a community neuro-rehabilitation service in line with the specification that has been developed. An audience member from the South Manchester CCG area explained that there is no community neuro-rehabilitation service in south Manchester and her husband has to go into hospital to access neuro-physiotherapy. This was emphasised as a health inequality. Rebecca Patel explained that such health inequality is exactly what Devo-Manc is trying to address in order to remove any post-code lottery. Wendy Edge from BASIC asked about the plans for vocational rehabilitation. Answer from Ashleigh: Vocational rehabilitation is in the specification but we need to iron-out what is needed for long-term vocational rehabilitation. There is a cohort of patients who need long-term rehabilitation to help them return to work. Currently, the staffing levels that are being proposed do not include resource to support long-term vocational rehabilitation. Page 14 of 22

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Deb Troops stated that the Greater Manchester Neurological Alliance is doing vocational rehabilitation. Q: Salford community neuro-rehabilitation team members spend a lot of time travelling and hence clinical time is being wasted particularly when staff travel out of area to a person who’s GP is in the Salford catchment. In the future, will people be seen according to resident or GP postcode? A: Commissioners will ultimately need to make that decision. Some commissioners are open to it being patient choice about whether to access the service based on residential or GP postcode. Dr Morcos commented that community neuro-rehabilitation services should be local. Ashleigh stated that she has pulled together some patient stories to share with commissioners. Ashleigh also explained that the information that community neuro-rehabilitation teams collect about their service varies considerably across GM and we need to build a culture of collecting information in community services. Q: It seems that you are interested in people who are going to get better, but people with progressive conditions need support to have a quality of life and that support is lacking in GM. What is happening with the neuro-palliative service? A: The neuro-palliative service needs to be looked at. The difficulty is that it is being considered as a general service, rather than specialist. Ashleigh continued, explaining that clinicians are waiting to find out if commissioners will fund the community neuro-rehabilitation model. Deb Troops expressed concern about the term ‘best value’. Neuro-rehabilitation isn’t considered to be best value and it’s not about quality of life, it’s about people’s quality of living. Other long term conditions don’t have to suffer like people with neurological conditions do. I’m concerned that commissioners won’t get this model. Ashleigh explained that commissioners have admitted that they don’t know a lot about neurorehabilitation, but commissioners are keen to understand and thinks that there has been a shift in understanding and a willingness to address the service. Dr Morcos explained that we have had good dialogue with commissioners and commissioners have been involved in developing the community neuro-rehabilitation model.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Break-out Sessions The audience broke into groups to consider previous feedback about the service, as well as questions posed to understand peoples experience and expectations.

Information and Communication Previous Feedback   



When people move between services, information doesn’t get passed on Information about voluntary services should be available on the unit We want information about the service, including what the different professionals do There should be a welcome pack for patients which includes a plan for each patient so we know what to expect, for example a personalized care plan

Questions to consider 1. How will the service ensure that feedback from patients improve the service? 2. What information should be given to patients and families at the point of diagnosis? 3. What information should be given to patients as part of a standard information pack for discharge? 4. How should patients and carers be communicated with? 5. How should the service ensure information is communicated / shared with the service people are being transferred to? 6. What advice should be available e.g. benefits, legal etc. 7. What else can we do to help people e.g. online cognitive training programmes, dietary advice etc.

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Feedback from the group “When people move between services, information doesn’t get passed on”.     

This needs to be somebody’s job Within the service and between services, information needs to be shared Need to know the process – e.g. a leaflet should be provided Professionals need some picture and understanding of home situation – person’s goals Better information transfer between diagnosis

How will the service ensure feedback from the patients improve the service?  Via patient societies and GMNA needs a staff member to be feasible and effective What information should be given to patients and families at the point of diagnosis?  How to re-access  How to get other help – NHS, Voluntary, private  Self-referral General Comments  We want to be able to cross boundaries that are set by Devolution - need to be able to access services across boundaries  Qualitative information – stories not numbers

Accessing the Service Previous Feedback  People are waiting too long to access services  Specialist staff need to assess patients  There should be consistent clinical decisions regarding eligibility to assess the service  There should be a route back into community services

Questions to consider 1. What would be an acceptable amount of time to access inpatient and community services? 2. Is it a clear pathway / patient journey? 3. Are there are any barriers / problems? 4. Is there anything missing? 5. What about transferring between neuro-rehab services? 6. How quickly should baseline assessments be undertaken? Page 17 of 22

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Feedback from the group What would be an acceptable amount of time to access inpatient and community services?  It depends on the situation therefore expert clinician triage is vital  Immediately (on discharge) – no waiting as it could cause a loss of gains and it’s a false economy  Nobody should be discharged without a rehab plan in place  The rehabilitation in the intermediate units need to be meaningful moving forward Is it a clear pathway / patient journey?  No – it’s multi-faceted. E.g. Parkinson’s, MS, TBI, Stroke and there is such a lot of variety.  Community model looks good – 3 month review of telephone follow-up  Concern that voluntary sector are being used in place of neuro-professionals – voluntary sector shouldn’t be a replacement but a compliment Are there any barriers / problems?  Funding  Culture  Politics Is there anything missing?  Opticians, pharmacists, dentist, accessible exercise, music therapy, funding for voluntary sector compliment  Carers health and wellbeing – how do we train / assist them to be part of the workforce  Carers assessments  Adequate facilities What about transferring between neuro-rehab services?  Patient notes need to travel with the patients – not being reassessed Other Main Concerns and Issues  People relapse and need more input and not less – no time limits imposed - people having to stop work to become carers costs the economy  Vocational rehab really needed from stage 1 and 2  Rehabilitation can save money – it needs investment  Model is good  Concerns about funding – services grossly underfunded Page 18 of 22

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GM Neuro-Rehabilitation Services Event: 8 September 2016

  

 

Support / help for carers Vocational rehabilitation from early on in the patient journey There is pressure for therapists under: o Under resourced o Work at home / additional hours o Unable to be robust o Data to challenge = current challenge Therapists need a network to support NEEDS LED – may be immediate to 2 weeks and depends on need that needs to be assessed by an experienced specialist / expert (triage). If patient is deteriorating whilst working this is unethical.

General Standards  Timely comprehensive triage of need done by understanding what is real to the person

Quality of Service Previous Feedback  There are large variations in community services  There should be support for people to access benefits when they are in hospital  Health and social care needs to be more coordinated  There should be support for people going back to work  Sometimes patients are not being treated with respect  People are not getting enough therapy and there’s a lack of consistency in the therapy (e.g. when staff go on leave, when bank staff are used)  People can’t access the therapist need (e.g. neuro-psychologist)

Questions to Consider 1. What is your experience of the services? 2. What should patients expect from the service? 3. What should the common standards be? 4. How do we make sure this service achieves what it is supposed to? 5. What about benchmarking against other services? 6. How do we make this service the best it can be for patients? (bearing in mind within the finances we have available) 7. What do you like about the model? 8. How will it benefit patients and staff? 9. How will it feel for patients and their carers / families?

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Feedback from the group What is your experience of the services?  Not good  Inappropriate  Poor What should patients expect from the service?  Definitely access to someone who can give benefit advice  Fair treatment What should the common standards be?  Communication across teams  Appropriate service  Fair  Geographically equal How do we make sure this service achieves what it is supposed to?  Work with DWP who will able to provide the benefit information  Dialogue with commissioners that’s effective How do we make this service the best it can be for patients? (bearing in mind within the finances we have available)  See commissioners What do you like about the model?  Holistic whole care team How will it benefit patients and staff?  More quality of lives

Feedback from the Break-Out Session Rebecca Patel asked each table to feedback one expectation/standard for the service Table 1: There should be clear, two-way communication between health care professionals and patients/carers Page 20 of 22

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Table 2: There should be timely, comprehensive triage by an expert practitioner, in conjunction with patients to understand what’s real and important to them. Table 3: People should be able to access community neuro-rehabilitation services before being discharged from hospital Participant Pledges As part of the event, participants were asked to make a personal or organisational commitment to the work the neuro-rehabilitation network, to ensure this work continues. Below is a selection of pledges from the evening. Be a great Chair of GMNA Deb Troops

I would like to represent patients and service users to commissioners Theresa Travis Deb Troops

 

Keep pressing for maintenance therapy for people with long term conditions Feedback to GMNR ODN own user evaluation of hydrotherapy in Bolton

Marie Oxtoby

I pledge to present your views to the decision makers of Devolution Greater Manchester and circulate your thoughts and ideas to them for comment Rebecca Patel

To share details of the event on the website so that people who couldn’t attend have the opportunity to comment and share their experiences Zoe Coombe

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GM Neuro-Rehabilitation Services Event: 8 September 2016

Next Steps    

Develop a set of standards from your feedback and insight Enable your insight to develop the service specifications Speak with commissioners Report back to you in four months-time about the plans for the service

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