Early Supported Discharge and Community RehabilitationA facilitated conversation involving professionals and people affected by strokeDr Patrick Gompertz, London Stroke Action Council, The Stroke AssociationRoyal London Hospital: 6th Feb 2012

1: What is the difference between ESD and CRTESD and CRT exist on a continuum, but each element delivers rehabilitation at a different level of intensity. Dr Gompertz’s presentation illustrated a possible configuration of ESD at the Royal London. This ESD team had originated as a component of the Tower Hamlets community-based team and remains an integral part of this team, and is based in the community. Studies of ESD teams showed that the duration of the ESD period varied widely from one team to the next, but stroke survivors present emphasised the importance of a significant period of intensive rehabilitation and it was accepted that the period could last up to 3 months.At many points, it was recognised that commissioning factors, rather than patient need, could determine and sometimes limit the flexibility of an ESD team.

2: What functions should people expect from their ESD and CRT? Evidence confirms that ESD/CRT produce better patient outcomes, but is there common agreement on what functions should be delivered by ESD/CRT?

It was accepted that the team should have the following main functions• Rehabilitation:

ESD/CRT primarily have a role providing people with support to achieve rehabilitative goals. One point of discussion was whether the accepted rehabilitation profile, typified by: intensive early intervention that tails off over time actually matches the patient’s requirements and capacity to achieve rehabilitative gains. It was reported by Dr Gompertz that sometimes a follow-up visit 1 year or even 10 years post discharge revealed additional rehabilitative goals that were achievable with further intensive rehabilitation. This suggests that a process that permits patients to re-engage with intensive rehabilitation long after the typical ‘ESD’ period is over would be useful.This resonated with the experience of stroke survivors present, with some saying that they felt ‘not ready’ for the intensity of ESD shortly after their discharge, because of ongoing exhaustion, nausea or the challenge of coming to terms with what had happened to them

• Resettlement The capacity of the ESD team to support ‘Re-settlement’ was seen as critical. In this context, re-settlement means ‘community re-integration’: i.e. support provided to people who do not necessarily present with any rehabilitative goals, but are nevertheless prevented from going home by barriers such as access issues, transport, finance, family support or social care.

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In the ESD/CRT Team, this function is provided by a ‘Key Worker’: It was suggested that this could be one of the team with some particular relevant role with that individual who’s leadership on this activity was acknowledged by other members of the team involved with that patient. People’s experience of the ‘Re-settlement’ function is that it can absorb huge amounts of time because issues are rarely straightforward and their resolution often depends upon the coordination of many different providers and personalities. The Stroke Association Information Advice and Support (IAS) Service provides exactly this kind of support. Examples were given of where such services are well integrated with ESD/CRT Services, with the IAS service providing this keyworker/re-settlement function to meet individual requirements.Stroke survivors present voiced their feeling that the role and expectations of a key worker: with responsibility for the critical re-settlement function and an ‘integrative’ role, needed better definition. It was suggested that given the importance and complexity of re-settlement, the Keyworker role should in fact be a discreet function rather than one that was shared between therapists. (See ‘Appendix 1: Who Is a Key Worker’ below)

• Life Long Support The completion of rehabilitative goals does not necessarily equate to successful community re-integration. As therapeutic engagement tails off to 6 month and annual reviews, there is often an ongoing requirement for contact: to support the social, emotional, psychological, practical adaptation to life after stroke that the family and the stroke survivor go through. This is important to prevent isolation, embed rehabilitative gains and reduce the risk of the breakdown of informal care arrangements. The ESD/CRT team should ensure that capacity exists, within the community, for the provision of long term support. The outcomes that should be achieved by such support would include enabling stroke survivors to identify meaningful life roles, receive peer and social support opportunities and for families and carers to receive continuing support to adapt to their roles. Addressing long term support should occur alongside the arrangements primary care are currently making to support people with long term conditions, as a result of the QIPP Integrated Care Teams agenda.

• Family and Carer SupportFamilies and carers become the primary source of support following discharge. Effective information and training can make all the difference, easing the emotional burden and supporting the stability of informal care arrangements. Rehabilitation Assistants are an important part of the Tower Hamlets ESD/CRT Team, and are trained carers who are able to provide more continuity around the interventions of therapists. Stroke survivors and carers present felt that often the domiciliary care provided privately or by the Local Authority should be seen as part of the stroke specific community support arrangements. Untrained carers were at best a wasted opportunity and at worst a hindrance to effective rehabilitation and reablement.

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This conception of what an ESD/CRT Team achieves for patients is echoed in the Consensus on Stroke: ESD Article, which states that: “ESD teams do much more than just rehabilitation. Signposting to key services, psychological support, and linking closely with other agencies is very important”

However, this holistic conception of the purpose of an ESD/CRT Team is not really highlighted in the London Specification which states that: The Aims of the service (London Service Spec) are to:

• Maximise Rehabilitation Potential and recovery after stroke• To minimise premature dependence on long term institutional or social

care• To prevent inappropriate hospital stays• To enable appropriate stroke inpatients to receive rehabilitation in their

own home at the same level of intensity as inpatient care (ESD)

3: Whole System Relationships

A significant point which resonated strongly with stroke survivors and carers, was the idea that community services like ESD/CRT do not exist in a bubble. They must deal with patients who are no longer in the controlled environment of a hospital, but have returned to the more chaotic environments of their communities.

This challenges even the most well-functioning support team to achieve optimum outcomes for patients if other ‘pieces of the picture’ are not in place. One example given was the difficulty in supporting and encouraging someone to mobilise in the early days following discharge: if (for example) their taxi card was not going to materialise for 6 weeks, severely limiting a person’s options. A further point that was highlighted was the support and training that family and carers required. It is often them who are left to “fill these gaps”, becoming de-facto key workers but with limited experiencei or networks. Provision of advice and guidance to family and carers was seen as an important function through these difficult periods.

Considerable variability in availability and quality of community support across London led one carer to suggest that proper standards should be set, and that residents of all London boroughs should expect certain minimum levels of support. It is true that such London wide coordination is championed through the Cardiac and Stroke Networks, but local variability in community services will always exist . It is important that ESD/CRT Teams are able to adapt to their own specific environments, compensating where gaps exist, and engaging where beneficial services are present. It was recognised that groups like the Cardiac and Stroke Networks, ESD/CRT Teams, the London Stroke Action Council and The Stroke Association along with LINk and others have a responsibility to people affected by stroke flag up the shortcomings of current provision and act as a force/catalyst for change to bring about improvements.

One consequence of the current variability between boroughs is that a one-size fits all standardisation of what an ESD/CRT team is will not be

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appropriate for all Boroughs.This means that in order to bring about a sustainable hospital discharge, effective resettlement and the best outcomes for patients, the ESD/CRT team must work flexibly with what is present, crossing and sometimes challenging organisational boundaries, advocating for their patient group and working to create a seamless and patient centred support experience.

Appendix 1: Who is the Key Worker? Who takes responsibility for supporting a person-centred approach to bring together all the resources necessary for a patient to achieve their own goals? A ‘key worker’ is mentioned in the London Spec, but seems poorly defined:

London Spec “Allocation of a key worker to support communication between stroke survivor and the MDT, implementation and review of the rehabilitation programme.”

The keyworker was described as supporting re-settlement. However, the community is a very difficult environment to operate in, characterised by a complex network of formal and informal support interacting with a broad spectrum of personal need and barriers.

Linking the rehabilitative and long term elements of the individual’s personal care plan/joint care plan, and bringing all elements of support into play at the appropriate time is hugely difficult. Who’s responsibility in the team is this? Is it the keyworker?

The London Spec states that CRT/ESD should establish strong relationships with relevant agencies (Statutory and non-statutory) along the wider stroke pathway. It goes on to identify 22 different community clinical services that the Community and ESD Teams have to establish key relationships with. In any Borough, there may be the same number again of voluntary and community sector providers that are relevant, such as Age Concern, Carers Association, Disability Alliance, Stroke Association, Neighbourhood Association, Housing Association, Leisure Centre, Pensioners Group, Communication Support Group, Benefits Agency, Community Law Centre etc.

In addition, the London Spec statesSystems and processes are in place to ensure collaborative working with primary care, secondary care and social care to ensure seamless transition of care for the stroke survivor along the pathway.How will this happen?

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