Rehabilitation, Enablement and Reablement Review What matters to patients and carers?

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1 Rehabilitation, Enablement and Reablement Review What matters to patients and carers? Purpose of paper The purpose of this paper is to provide an overview of the issues which are of importance to patients and carers in the provision of rehabilitation, enablement and reablement services. This paper will be taken into consideration when designing a future model of care. Feedback from patients and carers has been gathered through a series of workshops, and it has been established that patients want rehabilitation services which are: timely individually tailored provided locally based around regular reviews integrated across organisations committed to keeping the patient and carers informed Timely service provision In order to achieve the best outcomes, rehabilitation should be provided to patients as early as possible following illness or injury. In all cases, even those where it is not possible for the patient to physically begin his or her rehabilitation straight away, it is vital that rehabilitation planning starts immediately. Patients should be provided with a care plan as soon as possible so that they know what to expect. Before a patient is discharged from hospital, all rehabilitation and reablement services which they will require should be in place. Disputes between health and social care organisations about funding responsibility should not delay the provision of necessary rehabilitation, reablement or enablement (See 6.4, below). Services which are individually tailored Each patient should be provided with a package of rehabilitation, reablement or enablement services which is individually tailored to meet his or her needs. This does not necessarily mean that every patient will require a bespoke service, but patients should be able to access all clinically appropriate services on an a la carte basis. Where possible, patients and carers should be active partners in agreeing the rehabilitation and reablement package, and this should take into account the needs of the patient as a whole person. 1.1 Balancing realism and ambition Patients expect clinicians to give a realistic and honest appraisal of their prospects of recovery, and care planning should be based on this.

2 However, carers have told us about instances where patients were initially offered packages of rehabilitation which they felt underestimated the patient s future prospects and which didn t take into account the amount of effort which patients and carers were willing to invest. In these cases carers pressed for more ambitious programmes and the patient s recovery exceeded expectations. Rehabilitation and reablement should involve patients and carers in setting goals, and should support patients who are willing to be stretched. 1.2 Treating patients individually, not according to categories It was felt that under the current system, the range of services which are offered to a patient can sometimes depend on whether they fall into a particular category; for example, head injury patients or falls patients. In some cases, carers have been able to gain access to a wider range for services by pushing for patients to be officially recognised as disabled or having a learning difficulty. However, in most cases, treating patients according to a category limits their options. It is important that all services and therapies are made available to patients where this is clinically appropriate. 1.3 Taking an holistic approach Making sure that support for patients went beyond just getting them physically fit was seen as a priority. It is important to provide adequate mental health support to patients, and to help them overcome psychological barriers which prevent them from being as independent as they could be. It is important that rehabilitation and reablement services look beyond traditional definitions of what constitutes a health need and also consider the social and personal needs of patients. Both hospitals and community healthcare organisations need to ensure that people with disabilities are able to access services and that care planning takes into account any additional support needs which they may have. 1.4 Thinking for the long term In many cases, patients will continue to need rehabilitation and reablement input for extended periods of time. Often these patients receive a great deal of care, support and assistance from carers and relatives, but there was concern that long term planning does not consider what extra support patients may need when their carers are no longer able to make this valuable contribution. It is important that individual care plans recognise the additional support which some patients will need in the absence of their carers. It is also important that individual care planning takes into account the support needs of these carers.

3 Services which are provided locally Patients and carers recognised that in some cases there was a need for highly specialised care, and that in these circumstances care in dedicated facilities may be clinically appropriate. In all other instances, care should be provided as locally as possible to fit around patients lifestyles. For many patients care provided in their own home or place of work would be the ideal scenario, but making rehabilitation available in community hospitals, health centres, GP practices and community and leisure centres is also highly desirable. Services which are underpinned by regular reviews Patient s needs change, and it is important that their rehabilitation, enablement and reablement arrangements are reviewed regularly. Regular reviews allow clinicians to assess the patient s progress, to make changes to the programme of care where this is not achieving the desired results, and to ensure that the patient has no unmet care needs. Reviews also provide patients and carers with an opportunity to raise concerns and to work with clinicians to agree goals and next steps. Health checks and social care reviews should be used as opportunities to identify patients who could benefit from rehabilitation before they become well so that services, can be put in place before people become ill in order to help them remain independent -for example, falls prevention services for people who have mobility problems, or pulmonary rehabilitation for people with breathing difficulties. Services which are integrated The complexity of current service provision was a matter of concern for patients and carers, who want services to be provided in a joined-up way, by organisations which communicate and cooperate with each other. It was also emphasised that there is a need for public sector health and social care organisations to actively engage with the voluntary sector as partners in the provision of information, support and rehabilitation services. 1.5 Coordination across organisational boundaries There is a need for better coordination between the organisations involved in caring for patients. Care plans, assessment procedures, patient records and points of contact need to be unified and - where possible shared across organisations. All of the organisations which will be involved in providing rehabilitation, enablement or reablement to patients need to be involved from the outset to ensure a collaborative approach. There is a specific need for hospitals, community health and social care organisations to work together to improve transitions from between hospital, the home, and care homes. 1.6 Seamless provision of care It is not important to patients whether services are provided by a single organisation or team throughout, or whether they are delivered by a

4 number of different organisations. What is important is that transitions between providers, venues and services should be achieved with minimal disruption. Patients should receive a consistent standard of care at all stages of rehabilitation, and services should be provided continuously without gaps in coverage. 1.7 Preventing unnecessary disputes about funding It is accepted that there are some services for which patients may be means assessed and charged. However, patients and carers strongly felt that disputes between healthcare providers about which organisation was responsible for funding and providing care should not delay rehabilitation. Services need to be designed so that there are agreed processes for making sure that patients receive necessary care where there is disagreement about funding liability. Services which keep patients and carers informed 1.8 Ensuring people understand their rehabilitation package Patients often do not know what to expect from rehabilitation, and are not clear about the purpose of this package or the expected outcome. This information needs to be provided to patients in a convenient and easy to understand format. 1.9 Signposting services Although there are a wide range of services available, both through the NHS or local authority and in the private and voluntary sectors, patients are carers are often unaware of the existence of many of these services or how to access them. There is a need for a system of signposting services and providing patients and carers with the information they need to access these services, possibly through a Single Point of Access (SPA) contact centre. This information should include details of how patients can access services again if their condition changes after their course of rehabilitation has finished What to do when there is a breakdown in provision Patients and carers who experience a breakdown in the provision of rehabilitation or reablement services, or who feel that the care provider is performing poorly are often unsure whom they should contact to address this problem. Patients need to be made aware of the identity of the organisations which are providing services to them and the identity of the person who has overall responsibility for their care Helping people to understand their condition

5 Version 0 3, Services need to recognise the potential of patients or their carers to become experts in the management of their condition. By ensuring that patients and carers are properly informed about their condition and know where to go for further information, health and social care providers can help patients to maintain independence and avoid future complications.