Endorsements

What NHS Boards, HSCPs, health & social care professionals, professional bodies, academics, third sector partners & HD family members think…

“I congratulate the Scottish Huntington’s Association for their hard work in developing the National Care Framework. One of the reasons we were keen to fund and support this work was the potential applicability across other conditions. I commend the Scottish Huntington’s Association on the way they have approached this project, collaborating widely across the health and social care landscape. The framework has the potential to transform care for people with Huntington’s disease.” Shona Robison MSP, Cabinet Secretary for Health & Sport

“The Scottish Government warmly welcomes the Scottish Huntington’s Association’s work to develop a National Care Framework for HD that aims to help bring consistency to standards of care, information and support provided to HD families throughout the country… There is growing support for the view that the HD Care Framework has the potential to be used as a model for other neurological conditions, and I look forward to seeing how this exciting prospect develops.” Aileen Campbell MSP, Minister for Public Health

“This is a huge bit of work. Well done! I do not have anything to add.” Dr John Paul Leach, Chair of the National Advisory Committee on Neurological Conditions (2016 – 2017), Consultant Neurologist, Head of Undergraduate Medicine, University of Glasgow School of Medicine

“Firstly, the guiding principles feel very robust and aspirational. They feel at the heart of the whole framework, and I think you can feel the voice of people with HD throughout the whole framework. This does feel genuine throughout and I think could be an incredibly empowering tool for people living a whole life with an incurable and degenerative condition. It’s very positive to see a move away from ‘pathways’ and into ‘frameworks.’ The MS Society are currently exploring if the Huntington’s framework could be replicated within MS, and look forward to seeing the successes and learning as the framework is implemented.” Rebecca Duff, Chair of Neurological Alliance of Scotland & Head of Policy and Communications, MS Society Scotland

“I am really impressed.  It is especially ambitious and comprehensive in the areas covered, and I am always delighted to see such holistic viewpoints presented.  I’m hoping that the document will lead to funding to be able to implement the ideas put forward as regards services for HD families who need this so badly.  Huge congrats on all the work that has gone into this – it really shows!” Dr. Audrey Matthews, Lead Clinical Psychologist, NHS Lothian

“A terrific piece of work. It will make a big difference.” David Gillespie, Consultant Neuropsychologist, NHS Lothian

“As a social work Practice Teacher I have used the draft Framework to explore care issues and to illustrate to social work students how care should be tailored to the individual to accurately meet need.” Laura Lawrie, Social Work, West Lothian

“The College welcomes the interactive version of the framework and commends this excellent approach which is person centred.  A lot of the content is more general in nature, with some specific issues rightly highlighted more explicitly, which is appropriate given their significance for both the family and the health professional. Overall the College welcomes this approach and suggests it may be a good template for other conditions.” Royal College of Physicians & Surgeons, Edinburgh

“We believe the HD Care Framework is likely to meet its intended aims by bringing a consistency to standards of care and information and support provided to HD families throughout Scotland, providing a model for other neurological conditions and following the Scottish Government’s National Clinical Strategy, which sets out to ensure services are more aligned to patients’ wishes and reduce variation in patient outcomes across Scotland.” NHS Ayrshire & Arran

“Glasgow HSCP is supportive of this draft framework and will seek to work with HD patients and families in a manner consistent with its stated aims.” Glasgow City Health and Social Care Partnership

“It is great to see this bit of work come to fruition. I had a look at the interactive section and thought it was good and easy to navigate. I have forwarded onto some colleagues who may wish to give you further feedback, but overall we have a positive view.” Shiona Strachan, Chief Officer, Clackmannanshire & Stirling Health & Social Care Partnership

“This is a comprehensive, detailed, well laid out and easy to read/understand. And, importantly, were I to have an HD patient to look after in the future, this document would allow me to understand context/resources and strategy very well. Really excellent, fit-for-purpose document.” Dr Paul Kerr, Clinical Director, North Ayrshire Health & Social Care Partnership

“I would like to congratulate you on the development of such a comprehensive yet balanced framework to support the care of people and families living with HD.”  Janette Barrie, National Clinical Lead (Nursing) Anticipatory Care Planning Healthcare Improvement Scotland & Nurse Consultant Long Term Conditions, NHS Lanarkshire

“I wanted to congratulate you on all your efforts & thank you for the opportunity to be involved in something so important. Well done again.” Dr.  Alison Gordon, Consultant Old Age Psychiatrist & Lead Clinician for Huntington’s Disease, NHS Lanarkshire

“Fantastic work on this framework. I applaud everyone who has been involved in this. Very thorough and comprehensive.” Dina De Souza, European Huntington’s Disease Network

“I think this framework is excellent: clear and concise with good links to extra information. I particularly like the information on the theories underpinning the framework, the nursing consultations about the future of nursing that are taking place at the moment could learn from this.” Mrs Jacqueline Dunlop, Principal Genetic Counsellor, NHS Tayside

“I think that the framework is excellent and thorough and reflects what should be available to everyone who has a neurological long term condition. Clearly many of the issues that face people with HD are also faced by our MS client group. The approach taken in the framework is holistic, as it should be under H&SC Integration, and it is also practical. It would be great if this Framework was adopted across Scotland and became the template for other conditions.  I wish the Association well and applaud you for this piece of work and look forward to see how it is developed and delivered by the Health Boards across Scotland.” Iain Morrison, Chief Executive, Revive MS Support

“RCGP Scotland believes this to be a comprehensive review of the needs and potential ways of meeting these needs of those with HD and their families. It is a good framework that will provide a comprehensive infrastructure of support.” Jane Wilson, Royal College of GPs in Scotland

“I really liked the way that the framework is presented on the screen – the statements down the left hand side were very easy to understand and I felt that everything was covered. This is going to be a fantastic resource.” Dr Louise McCabe, Senior Lecturer in Dementia Studies, University of Stirling

“The document is excellent and includes pretty much anything I can think of that should be on offer to our patients with HD” Alison Livingston – Consultant Neuropsychologist, NHS Tayside

“It’s a comprehensive framework covering a wide range of issues and will support local pathway clarity/development.” Clare Wood, Associate Director AHPs, NHS Highland

“Parkinson’s UK welcomes the opportunity to comment on the Draft Framework, which is a thorough and rigorous piece of work. It follows a logical order, and the ability to click on a relevant section is particularly helpful for people who want information about a certain section of their journey. The Framework synthesises a huge amount of evidence into a very concise format. We strongly agree that the biopsychosocial model is a more helpful way of looking at complex neurological conditions than either the social or medical models, as it really captures the interconnectedness of all these aspects of people’s lives.” Tanith Muller, Parkinson’s UK

“What can I say? A masterpiece! It seems to have covered everything I can think of and a lot more. Brilliant! Well done!” Errol Walsh, Huntington’s Disease Association of Northern Ireland

“The framework is looking great. Really accessible and easy to use. It is an enormous piece of work… from my perspective it is looking excellent.” Dr Louise Blackmore, Consultant Clinical Neuropsychologist, NHS Highland

The depth of your thinking, your patient and family approach and especially their front end involvement will be most significant. What your group has accomplished will truly be transformational to health care for HD patients and families.” Jack Griffin, The Griffin Foundation, USA

“I must commend the Framework Development Group for producing such a concise document with very clear purpose and outcomes.  I think this is an excellent piece of work and I would like to send my congratulations to the group.” Dr Jenny Preston, Chair of College of Occupational Therapists Specialist Section Neurological Practice, Consultant Occupational Therapist & Clinical Lead Neurological Rehabilitation

“Great piece of work and thanks for inviting me to comment. This all looks pretty sound. Can’t think of anything reasonable to perfect or polish. Good job – I hope others will agree.” Dr Stewart M Donald, Consultant in Rehabilitation Medicine (Community) and Systemic, NHS Lothian 

“Well done on producing such a detailed and comprehensive document. I’m hugely impressed with the interactive version, not only will it prove useful in the HD field but I’m sure that the model will be able to be developed in other specialities.” Martin Bird, Mental Health Planning Officer, Health & Social Care, Midlothian Council

“The framework looks exciting and well thought out. The key themes and areas for attention are very rational and realistic. The sub categories are well connected and set out a realistic journey. Overall the care framework has gathered momentum and can be a real driver for the way ahead. This can potentially be a ground breaking flagship model for other neurological conditions.” Susan Dalgliesh, Edinburgh City HSCP

“I have no further comments, other than it looks like a fantastic practical and usable framework which I am looking forward to helping implement at a local level.” Katrina Lansdown, Occupational Therapist (Advanced Practitioner), NHS Lothian

“I have found the document to be comprehensive yet easy to navigate. If implemented across  Scotland this would be a superb resource for  families living with Huntington’s disease and for care providers  supporting them. In addition it has huge potential to be replicated across other long term conditions where care needs are complex and substantial.” Patricia McLaughlin, Snr Clinical Nurse Specialist, Single Gene Complex Needs (SGCN) Service, NHS Lothian

“A very comprehensive, well-structured and easy to navigate resource which I am sure will prove to be invaluable to individuals with HD, their families and professional groups alike as they navigate this very complex and demanding neurological condition. Well done.” Nicola Gillespie, Chartered Clinical Psychologist, Dept of Clinical Neuropsychology/ Lanfine service, NHS Lothian

“I would like to say that I found the online version easy to follow and very reader friendly. The content is clear and concise and gives an in-depth explanation of its purpose and expectations for those with Huntington’s.  It also clearly sets out the role and responsibilities for those providing support to patients and their carers.” Sharon Sansome, Team Leader, CPNE Service, NHS Lothian

“Reviewed interactive format on iPhone, iPad, NHS computer and NHS laptop.  Able to access interactive format on all devices. Format is clear and easy to navigate. Content is succinct and clear.” NHS Ayrshire & Arran Neurological Rehabilitation Services / North Ayrshire Health and Social Care Partnership

“First of all I would like to say that I think it is extremely encouraging that the Scottish Government has asked the SHA to lead on the development of the national care framework for HD. All in all I think this is a very helpful framework and I fully support the approach being taken in its development.” Craig Stewart, Associate Nurse Director / IJB Lead Nurse, East Ayrshire Health and Social Care Partnership

“Overall we are pleased to see the level of detail and thought regarding the needs of individuals with Huntington’s Disease, their carers and families and are agree with the essential underlying guiding principles of the framework.  We are also pleased to see the focus on the framework being a living document to evolve with services, particularly in times of change with integration, to allow the framework to continually evolve as required.” Dr Gary Tanner, Director, Psychological Services, NHS Lanarkshire

“This is very comprehensive and incorporates a lot of useful information. I think it will be great for families and individuals living with HD as they can pick out the information they require. It was also very easy to navigate. It looks like an excellent piece of work!”Jan Thomson, Service Manager, North Ayrshire Health & Social Care Partnership

“We have reviewed the National Framework and are pleased to note the themes reflect those incorporated in an Ayrshire and Arran pathway developed by a Joint Local Steering Group. The interactive version which will facilitate enhanced access is very welcome and will facilitate timely updates as indicated which reflect the evolving health and social care landscape.” Alison Findlay, Senior Manager, East Ayrshire Health and Social Care Partnership

“Thank you for the opportunity to comment on the NCF for Huntington’s Disease. Overall we were impressed by the breadth of the document. Specifically we value the specialist service input to support families which in our view needs to be maintained and expanded to provide more localised care.” Christine McNeill, Head of Community Health and Care Services, West Dunbartonshire HSCP

“I had look at the interactive page and the text document, and felt it covered everything I could think of.” Dr Khyber Alam, Associate Medical Director NHS24

“General thoughts on the framework are very positive, the Person Centred Approach fits with current national policy and strategies. The Family Systems Approach is also an important message to promote. The online version is clear and user friendly and is easy to navigate.”  NHS Education for Scotland

“The framework is clear and concise in the layout, information provided and format. I have read through the text format and interactive tool which is very helpful and easy to use. The guiding principles are a beneficial area to include within this toolkit as it helps to support educational and awareness needs and requirements. The framework also aligns with the core aims and objectives outlined within the national Anticipatory Care Planning (ACP) programme of activity, which is currently underway.” Sheila Steel, Associate Improvement Advisor, Healthcare Improvement Scotland

“I’ve now managed to look at the interactive version and am very impressed with its accessibility, clarity, comprehensiveness, and the appropriateness for clinicians, patients, families, associated agencies. I have nothing constructive to add.” Lizzie Finlayson, Clinical Lead, Aberdeenshire HSCP

“I’ve now had a chance to look over the Framework in more detail and I’m happy with it.  The 15 outcome measures seem realistic and from an MCN and the SLA we have in situ for Ayrshire I think the outcome measures can only give us clearer direction and it will be interesting as time passes to see how we measure up against other HB areas.  No concerns or surprises for me in the document.” Jacqueline K Downs, Neuro Rehabilitation & Managed Clinical Network Manager, North Ayrshire Health & Social Care Partnership

“I have looked through the text version of the framework and also the interactive on-line version and have no amendments or corrections to suggest. I think it looks a really good comprehensive document which clearly maps out the journey for HD people. The on- line version seems very easy to use with good accessibility for all client groups.” Gerry Dykes, Self Directed Support Manager and Professional Lead OT, Renfrewshire Health and Social Care Partnership

“I think this is an excellent document and have made very few comments” Linda Findlay, Associate Medical Director, South Lanarkshire HSCP

“HD appears poorly understood by health boards in some areas, and support can be hard to come by. The principles underpinning this framework are sound and the logical way it is set out is good.” Dr Roger Cable, Consultant Old Age Psychiatrist & Lead HD Clinician, NHS Dumfries & Galloway

“This is looking great and really coming together, you are doing an amazing job.” Catherine Martin, Vice Chair, (Global) Huntington’s Disease Youth Organisation

“I have now had a look at the framework and feel that it is very informative and would help anyone working with someone who has HD to identify what help and support is available and what should be getting offered at any given time.” Gillian Clowes, Team Leader, North Ayrshire CMHT

“We positively note the involvement of people with Huntington’s and their families, and health and social care practitioners in the development of this framework.  The framework has excellent information about what to do when a person is diagnosed with this illness and where to go to access and obtain support.  We welcome the emphasis on multi-agency working, and the person-centred approach which emphasises the importance of wellbeing.” The Care Inspectorate

“The Framework is incredibly comprehensive and clearly laid out, in an easy-to-follow way.” Sue Ryder Care

“I found the Framework very easy to manoeuvre, and very interesting without being overwhelming. It didn’t require to be an expert to get support and information that was informative without being frightening. I like that it will develop and change as needed and don’t have any criticism of what is there.” Liz Ferries, Team Leader, South Ayrshire CMHT

“I particularly like the core concepts and guiding principles focusing the entire document on person centred, family system approach and enablement with an emphasis on communication and clear pathways for multidisciplinary management. I wish you well with this document which is a very comprehensive framework.” Hazel Gaylor, Community clinical nurse specialist, NHS Forth Valley

“The holistic scope of the National Care Framework for HD is to be applauded.  The focus is clearly driven by the Person Centred Approach and Family Systems Approach, resulting in a Framework that encompasses all aspects of the patient’s life. The National Care Framework Themes are similarly comprehensive, covering the different stages of the ‘patient journey’.  The section on Integrated Multi Agency Arrangements, Referral Pathways and Resources is clear, thorough and succinct, presenting what could be viewed as complex issues in a very accessible format. Overall, the accessibility of the Framework is excellent.” Gus Ironside, Operations Manager (Scotland), The Brain Tumour Charity

“The Framework is really well put together and very easy to use.” Eoin Hanney, Genetic Counsellor, NHS Tayside

“Overall we think it is a strong framework and we appreciate the continued commitment to a family-centred approach.” Carers Trust Scotland

“I thought the interactive and adaptive online model was very good and clear.” Jenny Callaghan, European Huntington’s Disease Network

“A comprehensive piece of work.” Julia Clark, Consultant Neuropsychologist

“We have asked some of our clinicians who are experts in this field to review the text and interactive online versions and they have found the framework to be comprehensive and useful.” Royal College of Physicians and Surgeons of Glasgow

“I thought the content and approach of the framework seems sensible and practical. Thanks for the chance to comment!”  Mark Hazelwood, CEO, Scottish Partnership for Palliative Care

“I am very impressed with the framework and the interactive version.” Dr Seonaid McCallum, Consultant Psychiatrist, NHS Fife

“I thought that the online version was very easy to use and readily accessible. It provided easy access to relevant information for both families and friends. It gave current and forthcoming information about events happening. It is an excellent tool and I am sure will be much appreciated and used. Well done!” Fiona McGinness, Care Home Dietitian, NHS Lanarkshire

“I have found this a very comprehensive document which provides links to much of the information that I have been looking to have at my fingertips for some time. It seems to me to be fairly adaptable which is key. Given the local variations in Scotland in how care is delivered and given that how we deliver care over the years to come may also change, I feel it is crucial to have a document like this to hold us all to account in the care of our patients and families with HD. Thank you for inviting me to review the Framework and many thanks to all involved in putting it together.” Dr Catherine McWilliam, Consultant Clinical Genetics, NHS Tayside

“Congratulations on this piece of work, a very thorough framework.” Genetic Alliance UK

“My view was that – if we took the time to learn the lessons of similar work done for other conditions, and create a genuinely flexible and interactive care framework – we had a real chance of producing something that could significantly improve the care and support provided to families affected by HD. All the signs are that this is exactly where we have taken this great opportunity, resulting in what I believe to be an innovative tool that can guide health and social care professionals and empower HD families for years to come.” Dr Stuart Ritchie, Consultant Psychiatrist (HD Lead Clinician 2006 – 2016), NHS Greater Glasgow & Clyde

“I’ve looked through a few times. I haven’t found anything to amend or remove, and no suggestions to add. It is very comprehensive.” Dr Alasdair FitzGerald, Chair of Lothian HD Care Framework Group & Consultant in Neurorehabilitation NHS Lothian

“The BDA supports the overall intent and composition of the framework and we are of course very encouraged to see that a dietitian has been included in the development group. We are also content that the use of a dietitian has been included in the correct times and sections of the framework.” British Dietetic Association

“Marie Curie welcomes the draft National Care Framework for Huntington’s Disease (HD). We are pleased to see that it includes a palliative care approach under the core concepts. We support the references to use of the Key Information Summary (KIS). Research carried out by the University of Edinburgh shows that those with a KIS are far more likely to access palliative care than those without one. Marie Curie would be delighted to provide further support or insight to help the development and implementation of the National Care Framework for Huntington’s Disease.” Richard Meade, Head of Policy & Public Affairs Scotland, Marie Curie

“Very comprehensive.” Dr Richard Simpson, former MSP & Shadow Health Minister, Fellow of RCGPs & RCPsych

“I have had a look over your framework as you requested.  This makes eminent sense to me.  It identifies the main needs to be addressed by any supportive system.” Bob Bestow, MND Scotland

“I can see loads of work has gone into the finished product. Having the 4 main points at the very beginning is helpful. The website is compressive and easy to use. Well done to the team!”  Jacqui Terrance, Lead OT for Mental Health and LD, Lanarkshire

“The National Care Framework looks very comprehensive and appears to have covered all the areas required.” Pamela Caskie, Occupational Therapy, Lanarkshire

“Looks great – I can’t wait to start using final version to shape services!” Gordon Bogan, HD Specialist, NHS Highland

“As a consultant psychiatrist, the proposed Care framework looks very comprehensive.” Nikki Thomson, Consultant Psychiatrist, NHS Highland

“An excellent piece of work.” Angela Price, Falkirk IJB

“I have been excited to be part of a very significant piece of work. Throughout the whole process I have been confident that it has been in safe hands with SHA and that it was a piece of work that would be completed. It is a very thorough  piece of work which has resulted in a framework that is useable and understandable. With this framework I think there will be increased confidence in how to support people living with HD, and the real opportunity for services to develop how they work as individual services and how they work together in an effective way.  Thank you to the SHA for working hard to produce this and for all the people who have contributed. It is really satisfying to be involved in a quality piece of work that will make a difference. “ Mandy Graham, Team Lead Physio, NHS Lothian

“As an HD Specialist I deal with clients who face extraordinary challenges every day of their lives. The National Care Framework for HD is a fantastic resource and I look forward to using it to further enhance services for this very special and particularly deserving client group. I have no doubt that the Framework can make a massive positive difference to HD families throughout the country.” Alan McGill, Senior HD Specialist, NHS Ayrshire & Arran

“The National Care Framework is a major breakthrough for all concerned with the management and support of families affected by Huntington’s disease. It is extremely comprehensive whilst also being concise and accessible, providing a frame of reference for both professionals and HD family members and a range of outcomes to be measured against. I also believe the model advocated could be usefully applied to the management of other long term conditions. I congratulate all involved in developing this Framework, and look forward to using it to change HD care and support for the better.” Liz McConnell, Assistant Operations Manager (Adult Clinical Services), Scottish Huntington’s Association           

“As a member of the development group and having seen both my Mother and Brother struggle with Huntington’s Disease, I am hopeful that this will be an invaluable tool to empower family members to get the help their loved ones need at the appropriate time and also enable families to plan for the future more confidently.” Carolyn Craig, HD Family Member

“Many congratulations on the completion of a fantastic document. The compilation is rigorous and will be eagerly received across health, social and independent sectors.” Fiona Smith, Rehabilitation Manager, NHS Greater Glasgow & Clyde

“Due to the nature of Huntington’s disease, children impacted by HD are often inadvertently overlooked due to the complexities of the condition.  The framework design and content is superb and if utilised as intended will ensure that all members of a HD family have the correct information and are fully supported by appropriate agencies. A fabulous resource and a real benefit to the HD community.” Kirsten Walker, Senior Specialist Youth Advisor, Scottish Huntington’s Association

“The HD Care Framework ensures that the complexity of living with the disease is acknowledged, and also provides guidance for professionals to help them navigate their clients through their HD experience. The framework rightly highlights the critical role of local specialist HD services to support the extensive care team that’s required to deliver the best outcomes for HD families. This single point of contact, within a bewildering range of services, is invaluable for families affected by the disease. The framework’s acknowledgement of this fact is one of the key reasons I welcome its publication, and look forward to making use of it to the benefit of HD families throughout Lanarkshire.” Corinne Payne, HD Specialist, NHS Lanarkshire

“Not only does the Framework guide and inform health & social care professionals, it provides a vital and empowering resource for families and individuals affected by HD, giving them both information and leverage to ensure appropriate and timely support from a wide range of support agencies” Bob Bogle, Adult Non-Clinical Services Manager, Scottish Huntington’s Association

“When I worked as an HD Specialist, and before we had an HD Lead or for that matter anyone who had any interest or knowledge about HD, it was desperately frustrating trying to obtain any support or relevant information for families in relation to HD or its management.  I often found myself frantically scrabbling around trying to get help or advice usually only to come up against dead end after dead end and not knowing where to turn. Having access to this Framework will change all that. Having all that information at our fingertips, providing a plethora of advice and knowledge accessible to everyone no matter where they live, is like winning the lottery.” Karen Sutherland, Adult Clinical Services Manager, Scottish Huntington’s Association

“From the outset our aspiration was to undertake a transformational piece of work that would set out a model of care, fit for an environment where health and social care are being integrated and which significantly raises the profile of Huntington’s disease. It was a sizeable challenge, but what has and will sustain us is the energetic engagement of hundreds of family members and professional staff from every imaginable discipline.  Their contribution – and particularly those of our expert development group – have brought rigour and confidence to the process, and the development of an interactive online framework; an innovation which will undoubtedly contribute to the future success of this work.”

“SHA owes a debt of gratitude to everyone who participated in the development of the Framework. Together, we have created a momentum that will carry this project into its most important phase: improving the way services are delivered to people living with HD and their families. To succeed we will need to further build on the growing coalition of support. I am particularly delighted that the Scottish Government, the Minister for Public Health and all opposition parties at Holyrood have backed the Framework, and also that colleagues in other neurological charities have warmly received it. Along with all the wider support, this makes me feel optimistic that it will create real and lasting change.” John Eden, Chief Executive, Scottish Huntington’s Association

National Care Framework for Huntington's Disease