Written evidence from the Huntington's Disease Association (PCC0007)
HOUSE OF LORDS INTEGRATION OF PRIMARY AND COMMUNITY CARE SELECT COMMITTEE INQURY
HoL Integration of Primary and Community Care Committee - Huntington's Disease Association Submission
Date: 5 April 2023
Author: Charlotte Gerada on behalf of the Huntington’s Disease Association
Introduction to Huntington's Disease Association
Based in Liverpool, the Huntington’s Disease Association (HDA) was founded in 1971 with the objective of providing support, advice and care for people living with Huntington’s disease in England and Wales. With a committed nationwide team, HDA supports people living with the disease and their families and carers.
The charity champions the needs of the Huntington’s community and through a multifaceted approach helps to educate families, friends, and healthcare professionals about Huntington’s disease. These efforts are accompanied by seeking to influence decision makers and keeping the wider Huntington’s community well informed about key developments. The HDA provides advice, support, information and specialist services, including:
● Specialist Huntington’s Disease Advisory Service
● Youth Engagement Service (HDYES)
● Training programme for health and social care professionals
We are submitting evidence because people living with Huntington’s disease access a wide range of healthcare services and there are a number of persisting issues being experienced across the country. Increased integration between primary and community care and improvements to local services would make a big difference to people living with the condition and their families and carers.
1. What are the main challenges facing primary and community health services?
1.1. The main challenges facing primary and community health services is a lack of resources to meet current demands and staffing shortages that are impacting quality of care and waiting times for services.
1.2. This is particularly the case for community mental health services that do important work to prevent more severe mental health issues from occurring and crisis situations for patients, but at present these services are over-burdened and under-resourced.
1.3. As an organisation we know of countless examples across the country where Huntington’s disease patients are being refused community mental health services because people with ‘organic brain disorders’ aren’t eligible for mental health support. We have found that this is written into the eligibility criteria for some mental health trusts.
1.4. As Huntington’s disease causes physical and mental symptoms, excluding those with the disease from mental health services is detrimental to their health, quality of life and safety. This also has a significant knock-on effect for carers and families who have firsthand experience of the outcome of their relatives going without vital mental health support.
1.5. When those affected by Huntington’s disease inform us as an organisation that they have been rejected from accessing mental health services, often this is because there is a lack of understanding as the condition is rare and complex, and because of a lack of confidence about how to treat patients with Huntington’s disease. Those living with the condition exhibit mental health issues like people without the condition and therefore just need timely access to existing services as they are.
2. What are the key barriers preventing improved integration, and how might these be overcome?
2.1. A key barrier preventing improved integration is the lack of specialist nurses for some less common conditions. There are specialist nurses for a whole range of health issues, but there is a severe shortage of specialist nurses for rarer, genetic and neurological conditions across the country.
2.2. As Huntington’s disease targets nerve cells within the brain, causing a triad of symptoms (motor, cognitive and psychiatric), patients require a complex care pathway and rely on multi-disciplinary teams. However, the NHS does not currently have a service model that outlines the delivery of care for patients with the disease. This means that the standard of care for patients can vary across the country.
2.3. There are examples where local leaders and organisations have worked together to create transformational change for people living with Huntington’s disease. In a collaborative project we have developed a new service model that aims to improve care and support for people with the condition. The new model seeks to build on existing services, overcome barriers to care and provide additional support for people living with Huntington’s disease.
2.4. Partners included Surrey Heartlands, Kent Surrey Sussex Academic Health Science Network, Roche Products Ltd and the Huntington’s Disease Association. It took a co-production/co-design approach, with stakeholders from project partners, St George’s Hospital, local health and social care staff, patients, families and carers. The service model has been introduced for the care of patients with HD, their family members and carers residing in Surrey. A clinical nurse was recruited too.
2.5. One of the key recommendations was to introduce a named care coordinator for Huntington’s disease in each area to improve navigating services required. This was in addition to taking a multidisciplinary approach to healthcare, covering neurology, occupational therapy and physio, mental health, care and nursing, general medicine and dieticians, speech and language therapists.
2.6. In sharing learnings from this approach, the named care coordinator within local areas could be a specialist nurse. These nurses could lead on a range of rare and/or genetic conditions and be a role taken on by existing staff in current healthcare staffing structures.
3. Pressures on primary care have been well documented. How would you assess the current state of community care, in particular the integration between both areas?
3.1. Community care is also under pressure at present. A combination of responding to the backlog caused by Covid-19, the increased mental health issues as a result of the pandemic, as well as the cost of living crisis and general increases in population demands for services due to demographic changes are all causing longer waiting times for services and is lowering the quality of care.
3.2. On top of the increase in demand for services is the ongoing staff shortages with health and social care that is making it more challenging than ever to meet the needs of the community.
3.3. As an organisation, we are finding that due to those living with Huntington’s disease not receiving adequate support, particularly with mental health issues at an earlier stage, more people are being pushed into crisis situations, requiring hospitalisation and more severe methods of support, such as needing to be sectioned. This has a huge impact on the costs for the NHS to support people, but also for the wider family and community who have to endure such difficult personal circumstances.
3.4. More needs to be done to improve the availability of proactive, preventative mental health services at an earlier stage - this would mean increased resources, more staff and more training to ensure the best services are offered.
4. What are the implications of the Government’s long-term workforce plan for the NHS on primary and community care staffing?
4.1. There is a need for an updated, forward looking and long-term workforce plan for health and social care as there are significant staff shortages in a number of areas that are affecting the availability and quality of services. Demand for primary and community care have increased in recent years and this hasn’t been matched by adequate staffing, with the training and skills required to meet population needs.
4.2. Issues of recruitment and retention of staff is holding back health and social care services from providing the care required by the population. This is particularly true for people affected by Huntington’s disease who require a multitude of services due to the complexity of the condition.
4.3. A lack of multidisciplinary working across different teams and professions is also preventing people living with Huntington’s disease from accessing the right care and the right time, depending on the stage of the condition and severity of symptoms.
4.4. Multidisciplinary working should be a standard approach across health and social care, to better integrate primary and community care and meet the increasing and more complicated needs of the population.
6. Is the current primary care model fit for purpose and servicing the needs of patients?
6.1. The current primary care model doesn’t service the needs of all patients as more could be done to deliver support and services at the community and neighbourhood level. There are more services available at the community level, but this could be extended.
6.2. For people living with complex neurological conditions such as Huntington’s disease, attending primary care appointments for support can be challenging, especially for those at the middle and later stages of the condition. Getting to and from the primary care location, the cost of travel and transport, the impact of the symptoms on the ability for the person all creates barriers for people affected by the condition to get the support they need.
6.3. Services provided at the community level enables patients to access services closer to where they live, which is more convenient and accessible for disabled people. The offer of more services within the home, in particular by specialist nurses, helps to improve access and impact of services even further.
6.4. For example, University Hospital Southampton has a specialist Huntington’s disease nurse that provides support to people affected by Huntington’s disease across Hampshire, Dorset and the Isle of Wight. The nurse provides advice and support in the home, with referrals to other community-based services.
8. To what extent could improved access to out of hours and 24/7 services contribute to alleviating pressures on the health system?
8.1. Improved access to out of hours and 24/7 services could help to provide more opportunities for patients to access healthcare services and tackle the existing backlog of patients waiting for care.
8.2. However, the ongoing issues in relation to the healthcare workforce, in particular, the staffing shortages and challenges with recruiting and retaining staff won’t be improved by this approach. Actually, by expanding service times without plugging existing workforce gaps, more pressure will be placed on existing staff who are already overburdened and facing crisis point.
8.3. In order for a policy like this to work practically, the extension of services needs to be matched by an increase in resources and a plan for an increased workforce. Otherwise, existing staff might be more likely to leave the profession and this would exacerbate waiting times for services.
9. To what extent have Integrated Care Systems (ICSs) been able to deliver the aims they were set up to achieve?
9.1. As mentioned previously, as an organisation we know of countless examples across the country where Huntington’s disease patients are being refused mental health services because people with ‘organic brain disorders’ aren’t eligible for mental health support. We have found that this is written into the eligibility criteria for some mental health trusts.
9.2. As a core purpose of ICSs are to bring partner organisations together to improve outcomes in population health and healthcare, and tackle inequalities in outcomes, experience and access, this exclusionary policy is making it difficult for local leaders and ICSs to achieve their goals. It is also letting down many people affected by Huntington’s disease, who are being turned away from critical services that would improve their quality of life, as well as the lives of their families and carers.
9.3. Greater collaboration with leading voluntary sector organisations is critical in developing coordinated, nimble and effective healthcare services across local areas. Like many other specialist organisations, the Huntington’s Disease Association works directly - on the frontline - with people affected by Huntington’s disease in England and Wales.
9.4. We have a committed nationwide team of Specialist Huntington Disease Advisers (SHDAs) that support people at the different stages of their journey with the condition. We also deliver training to health and social care professionals about the disease and how to develop services to best support patients with the condition.
9.5. Given the breadth and depth of our expertise and the knowledge we have about what good services for people with Huntington’s disease looks like, greater collaboration between us and ICSs would help ICSs to innovate further.
9.6. Meaningful engagement of this kind with specialist health charities will enable services to be improved faster, learnings to be shared more quickly and challenges to be tackled more promptly.
10. Could you provide examples of how primary and community care have contributed to tackling health inequalities, including international comparisons?
10.1. Primary and community care have contributed to tackling health inequalities through bringing together the NHS, local government, the voluntary, community and social enterprise sector and other partners to better integrate services. There are examples of where taking a more collaborative approach has improved the health and wellbeing of local populations. This collaborative framework is working exceptionally well in Birmingham for those affected with Huntington’s disease.
10.2. At the Birmingham and Solihull ICB, there is a comprehensive multidisciplinary health service that is accessible to anyone affected by Huntington’s disease. The West Midlands Huntington’s team specialist tertiary service (based at Barberry Centre, Birmingham) consists of: consultant neuropsychiatrists, specialist occupational therapists, speech and language therapists, dietitians, researchers, specialist nursing home and hospital liaison nurse and a physio.
10.3. Referrals to this service are via a GP or consultant (if the patient is in the Walsall area) and are straightforward to access. The multidisciplinary policy framework works exceptionally well in ensuring that a patient receives all the support they need from one central point, rather than the patient and their carer/family needing to constantly advocate for their healthcare needs and navigate several complex healthcare pathways concurrently.
10.4. The success of this service comes from the co-production approach taken to develop it, working with us as a charity and other key stakeholders to ensure it is as effective and efficient as possible.
11. In what way could the existing infrastructure be enhanced to improve the use of health technologies, and what are the possible benefits for patients?
11.1. The Huntington’s Disease Association has an innovative use of digital services and online offerings. We host webinars, host online carers groups and share social media content offering support, learning and peer support. In turn we would hope that this is a preventative activity that prepares people for the future.
11.2. Most areas now have Multi Disciplinary Teams via Zoom which is a huge cost and time saving. Also clinics are offering a hybrid approach to patients offering more to those who prefer online and opening up services to more people. This is definitely something that should be embedded and extended within healthcare services.
11.3. This approach has benefits for patients as it makes services and support more accessible, encourages the development of knowledge and expertise among healthcare professionals (especially for rare conditions like Huntington’s disease) and provides more coordinated care that ultimately improves services for those with complex conditions.
12. Could you please outline one key change or recommendation you would like to see to enable effective and efficient integration in the delivery of primary and community care services?
12.1. One key change that would enable effective and efficient integration in the delivery of primary and community care services would be the development of NICE guidelines for Huntington’s disease.
12.2. Huntington’s disease is a complex, genetic, neurological disorder that combines mental health symptoms, physical disability and cognitive impairment. The disease is unique due to the variety of symptoms it causes, its adult onset, duration and it being a genetic condition with the ability to conduct a predictive test.
12.3. As only 8,000 people live with the condition and 32,000 people are at risk of developing it in the UK, the disease is rare and many professionals wouldn't have managed someone with the condition. We know of many people living with the disease that go to GPs who don’t know about the disease. The rarity causes huge barriers for people to access the right care and support. There is a significant amount of knowledge in the UK about Huntington’s disease, but it’s currently not in the right place and it’s not centralised. NICE guidelines would change that.
12.4. At present, there is a significant postcode lottery in terms of the levels and quality of services available to Huntington’s disease patients. There is no national pathway or framework that professionals can work to.
12.5. We have undertaken mapping across all ICSs in the country and there are significant gaps in at least 10 areas in the country. For example, there are limited services in Harrogate, Derbyshire and Berkshire and no services at all in Sandwell, Herefordshire and East Sussex. Our team of Specialist Huntington’s Disease Advisers across the country report that in areas where there aren’t services, patient care is detrimentally affected.
12.6. To the contrary, where people living with Huntington’s disease have their own local pathway, they work well and enable good outcomes. But rather than replicating the work, there should be a standard pathway for local services to deliver to. This would save the NHS a lot of time because at present, ICSs are having to develop their own service delivery plans in isolation.
12.7. Unfortunately, Huntington’s disease patients have been let down within the health and social care system for decades and this doesn't seem to be improving, due to the lack of awareness and understanding of the condition and how best to manage symptoms among professionals. Also, because Huntington’s disease currently relates to several NICE guidelines, patients are falling through the gaps and aren’t being supported holistically.
12.8. NICE guidelines would help to drive up the quality of care for this complex condition and would tackle inequality of access to services. They would also build confidence in future generations who may have the condition in adulthood that they will receive adequate care.
April 2023