**DRAFT – National Care Framework for Huntington’s Disease (TEXT ONLY VERSION) – DRAFT** Background In October 2015 the Scottish Government commissioned the Scottish Huntington’s Association (SHA) to develop a National Care Framework for HD by the beginning of 2017, with localised versions for each Health Board area to be developed to sit under this by 2019. SHA appointed a National Care Framework lead in November 2015, who commenced work at the charity in January 2016. SHA is determined to ensure that the Framework is developed by HD families and experienced health and social care professionals. Rather than seeking to consult all such contacts at once, it was felt to be more manageable and efficient to pull together a relatively small development group to come up with a draft Framework, and to consult upon that once completed. The group - which was confirmed in May - includes representatives of HD families and carers, psychiatry, psychology, neurology, neuropsychology, genetics, rehabilitation, dentistry, GPs, speech and language therapy, dietetics, physiotherapy, occupational therapy, care homes, palliative care, social work and academic and research institutions. Its membership can be viewed in Appendix I. By June the Development Group had agreed key themes on the purpose and format of the Framework (see Appendix II). In September the HD National Care Framework Development Group concluded that it was content for its draft of the Framework to go out to wider consultation. A short initial period of consultation on the text only version of the Framework followed. This Phase 1 consultation opened on 15 September and closed on 7 October with 44 responses being received (see Appendix III). The Framework was further updated on the back of this consultation to create the current draft, which is now open to full public consultation. Whilst the short Phase 1 consultation was taking place the Development Group agreed upon the preferred format for the final version of the document, comments on which are also welcomed as part of this full Phase 2 consultation. Your feedback: Full Phase 2 public consultation, 28 October – 9 December 2016 What follows is the draft text of a National Care Framework of HD in Scotland. It should be noted that it is NOT intended for the final Framework to be published in this format. Rather the approved text is to be slotted into an interactive web based format to be viewed on a PC, laptop, phone or tablet. Not only will this make it easier for users to navigate to the information they require, but it will also ensure that the Framework is flexible and can evolve over time as and when evidence and/or health and social care services and structures change, to prevent it from becoming obsolete. We would be extremely grateful for your feedback on the current text as outlined in this document. This can be provided either by returning this document with tracked comments within it or by sending comments within the body of an email. Alternatively a time can be arranged to provide comment over the phone, or at a face to face meeting. The interactive web based version can be viewed here: http://care.hdscotland.org/ . In addition to thoughts on the text of the Framework as detailed below we would also welcome comments on the usability of this proposed format. It should also be stressed that this is the proposed overarching National Framework, and will therefore not necessarily align with current experience in your own area. Once the overarching National Framework has been finalised work will commence on developing tailored localised Frameworks for each NHS Board area, to be in place by 2019. Please direct all feedback, or questions, to the contact provided below by Friday 9 December. The document will be updated in light of this feedback before being run past the Development Group for final comment and publication in early 2017. Alistair Haw National Care Framework Lead Scottish Huntington's Association Business First Linwood Point Paisley PA1 2FB Mob: 07736 457247 Email: [email protected] **DRAFT – National Care Framework for Huntington’s Disease (TEXT ONLY VERSION) – DRAFT** AN EVOLVING FRAMEWORK (To be shown as footnote on all pages of Framework) The National Care Framework for HD is a living document, designed to evolve along with changes to health and social care systems, structures and personnel. In addition to periodic review we are indebted to the assistance of users in ensuring that the Framework remains up to date. If you see any errors or omissions please email [email protected] or call 0141 848 0308 and changes will be made, as required, as soon as possible. To ensure you are viewing the most up to date version of the National Care Framework please view on the Scottish Huntington’s Association website only, via the following link : http://care.hdscotland.org/ Note re below Framework text: Blue & underlined = active web link Red & underlined = web link required but not yet available/ located **DRAFT – National Care Framework for Huntington’s Disease (TEXT ONLY VERSION) – DRAFT** CORE CONCEPTS This Framework seeks to ensure that the care and support provided to families living with Huntington’s disease takes account of their specific health & social care needs throughout their experience. It does not advocate a “single pathway” or “one-size-fits-all” approach. Every person’s experience is unique and requires to be treated as such. Individual care and support packages require to be created in partnership with families. This requires four key elements: 1. Care coordination should be provided by a single named specialist (ideally, but not necessarily, an HD Specialist – see Glossary) who has a key role in assisting families to navigate their way through their HD journey 2. Care should be provided by a clearly defined multi-disciplinary team consisting of core members whose roles are essential in managing health and social care needs 3. Access is required to a wider and clearly mapped network of services where well-developed referral and liaison arrangements are in place 4. Specialist staff play a central role in providing training and education to the wider support network. Each NHS Board area should have arrangements to deliver training appropriate to its own workforce THEORETICAL UNDERPINNINGS Person Centred Approach (PCA) A Family Systems Approach (FSA) A Biopsychosocial Model of Health & Personalisation Palliative Care Approach Disability The Person Centred Approach (PCA) offers a A Family Systems Approach (FSA) considers the Whilst disease dominates biomedical thinking, the Personalisation is a social care approach The World Health Organisation defines palliative strong model of care for Huntington’s disease, as family as a ‘dynamic, emotional unit’ where family Biopsychosocial model seeks to integrate the described by the Scottish Government Health & care as an approach that improves the quality of it seeks to identify what is most important to the members are interconnected and there is an health impact of disease with the psychological, Social Care Directorate as meaning that “every life of individuals and their families facing the person who receives support, whether person and their family. inevitable knock on effect to changes within social and emotional factors in diagnosis and problem associated with life-threatening illness. It another member’s life. provided by statutory services or funded by does so through the prevention and relief of treatment. It recognises that illness cannot be Based on recurring themes that distinguish themselves, will have choice and control over suffering by means of early identification and studied or treated in isolation from the social and ‘person-centred’ from ‘good-quality’ care, it has Life events for one individual can have a direct the shape of that support in all care settings.” assessment and treatment of pain and other cultural environment. six core themes: impact and consequence for someone else. problems, whether they be physical, Self-Directed Support is one example of psychosocial or spiritual. Whereas the Biomedical Model prioritises Knowing the individual FSA holds that each family member cannot be personalisation. professional knowledge, the Biopsychosocial treated or supported in isolation. Palliative care: Centrality of values Model expects health carers and doctors to Creating a biography acknowledge and take into account each person’s The impact of HD on families is immense and a Quality of the relationship circumstances. provides relief from pain and other distressing FSA is essential. Seeing beyond immediate need symptoms Genuine authenticity This approach also recognises that much of the affirms life and regards dying as a normal impact of disability is a result of systemic factors process A key benefit to this approach is that it aims to e.g. cultural attitudes to disability, stigma & intends neither to hasten or postpone death capture the ‘human-ness,’ and core factors environmental barriers. integrates the psychological and spiritual regarded as a priority or most challenging to our aspects of care lives. offers a support system to help individuals live as actively as possible until death McCormack (2004) further highlights that PCA offers a support system to help the family captures the “moral law that each and every cope during the person’s illness and in their person has an intrinsic, inalienable, unconditional own bereavement and objective worth and dignity.” uses a team approach to address the needs of individuals and their families, including PCA demands that we see the person bereavement counselling, if indicated foremost rather than their illness. In practice seeks to enhance quality of life, and may also with HD, this approach may encourage positively influence the course of illness practitioners to view the person as a partner in the care for their disease. **DRAFT – National Care Framework for Huntington’s Disease (TEXT ONLY VERSION) – DRAFT** 1. Deciding whether to have the genetic test and getting advice about 2.