Epilepsy Action has responded to questions 1, 5, 8, 14, and 15 in our written evidence.

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1 Submission of Written Evidence from Epilepsy Action to the Joint Committee on the draft Care and Support Bill Friday 18 January Author Nicole Crosby-Mckenna for Epilepsy Action (corporate basis) contact telephone Epilepsy Action is the UK s largest member-led epilepsy charity. Overall, Epilepsy Action welcomes the draft Care and Support Bill. Potentially, the draft Care and Support Bill could improve the quality of life of some of the 600,000 people living with epilepsy in the UK and their carers and families. Epilepsy Action has responded to questions 1, 5, 8, 14, and 15 in our written evidence. Q1: Epilepsy Action s general view on part 1 of the draft Care and Support Bill 1) The draft care and support bill establishes important provisions to potentially help more people (including carers) with an underlying need for care and support to access it when they need it. The bill seeks to better integrate health, social care and other important provisions such as housing. This could make the whole support system easier for people to navigate, and crucially at an earlier stage to defer the onset of high level and critical care and support needs. 1i) Omissions: Rather than omissions (per se) there is an issue of the draft bill stopping just short in several of the clauses contained in part 1(discussed further in answer to other questions), and of important terms being used in the draft bill and either being ill defined or not defined at all. This creates the potential for mis-interpretation. Example terms include: well-being, integration, co-operate, urgent and temporary. 2) Q5: Does the draft Bill make sufficient provisions to achieve the Government s stated goal of greater integration?

2 From the view point of our members, Epilepsy Action believe that the Bill falls short of underpinning greater integration within the domains of the NHS, Care and Support and Housing. 2i)The bill and clauses 4, 5 and 6 fail to legislate on how the different domains will be physically, and practically be integrated. Co-operation itself is not Integration. Cooperation is not enough to prevent fragmented health, care and support, nor inconsistent approaches to care and support across different patients and regions. 2ii) The draft Bill omits any explicit requirement on local authorities to ensure the integration of care and support at the point of discharge from hospital. The draft Bill is limited in terms of the service provides who could be involved in the integrated service. Given the changing landscape of health and social care, a broader range of health and social care providers could be referenced. 3) Q8: Are the provisions of the draft Bill in relation to service users sufficient. Epilepsy Action welcomes many of the principles of the draft Bill. However, some clauses and the draft Bill itself stop short of being sufficient. From the perspective of a potential client several issues still exist. 3i) Clauses 4, 5 and 6 of the draft Bill omit any reference to how a person with support needs will access integrated services. Epilepsy Action is concerned that a health and care system only integrated in theory will create a more complex system for a potential client and their carer to navigate. The risk still remains that clients (and their carers) could find themselves stuck in the middle of the system, and trying to act as a go-between health, care and support and housing services and staff. 3ii) A possible solution is the employment of key workers for people with medical conditions. Another potential solution the use of Integrated Care Plans (encompassing health, care and support needs) across the domains. Currently national clinical guidance states that people with epilepsy should have a care plan.

3 However in A Critical Time (a study by Epilepsy Action released on 22 January 2012), only 47 per cent of acute trusts said that they routinely offered their patients with epilepsy access to a care plan. 3iii) Clauses 24 and 25: Epilepsy Action welcome the draft Bill in seeking to empower the person, and taking a person centred approach. We believe that robust integrated care plans will help people and their carers to navigate the system. We believe that they will encourage professionals to truly integrate health, care and support for the individual. They will also create a more transparent service, where clients are informed of all decisions made about their care and support needs. 3iv) However we agree with National Voices that the drafting on care planning needs to be strengthened. We also agree that the draft bill omits to explicitly state the relationship between health and social care. 3v) Clause 2: Informed choice leads to better personalisation of care and support. Epilepsy Action believes that Clause 2 should acknowledge the need for information and advice to be accessible (in terms of language, and format), clearly discuss potential cost implications, and be independent of the social care provider. This would encourage and enable clients to make an informed choice reducing the risk of uninformed choice or no real choice. 3vi) The clause also omits any reference to how the person can assert their legal rights (for example, to a support needs assessment). 3vii) Clause 7: Epilepsy Action fully support the ethos of prevention, and a move away from social care and support only being activated once a persons needs have reach a critical level. However, we agree with National Voices that Clause 7 omits to adequately reflect and underpin the goals set out in the white paper on reforming care and support.

4 3viii) Clause 26: This clause should contain a subsection relating to the persons right to appeal a decision, have their appeal dealt with within a reasonable time, and for services to be provided in the interim. This should apply to new assessments and re-assessment of needs. 4) Q14: What are the risks and benefits associated with self-assessment for care and support? For self-assessment to work the assessment form, scoring system, guidance and support materials must be well written, clear and accessible. 4i) There is a risk that self-assessments may be completed inaccurately, giving people a false opinion of whether or not they have care and support needs, and are eligible for help. Not everyone is aware of the full extent of the care and support needs. 4ii) However benefits of self-assessment include it being person centred, can be made accessible, and adds transparency to the process. People who need or want help can ask for it from a provider or a local advocacy group. 5) Q15: What are the best ways to increase the numbers of people identified as carers? A communications plan could ensure that more people are told what a carer is, and what support could be available to them. For example the communications plan could include advertising, distributing promotional materials to people in receipt of care and support (to pass to any official / unofficial carers). 5i) Charities, the voluntary sector and educators/teachers and children and family centres to play a key role in identifying people and children who are carers, but might not recognise themselves as such. 5ii) It is crucial that carers and young carers are given access to support and accessible information about the process. The outcome of the assessment also needs to be given to the carer in a meaningful way that they can understand. An

5 identifiable key worker is crucial to the success of adequately supporting the young carer. They are the lynch pin in ensuring support is integrated between health, local authorities and the child s school.