News item

Archive of: 2020


  • SHCA submits response to the NICE methods review

    The SHCA submitted a response in December to NICE’s high-level consultation on its proposed ‘case for change’ for changes to its methods.

    The SHCA welcomes NICE’s recognition of the need to enable greater flexibility in the assessment of treatments for rare and complex conditions. However, there is a need for much more substantive detail in many areas and for NICE to go further in updating its approach in others, to provide assurances that the changes will deliver improvements for patients in practice.

    In particular, the SHCA is calling for NICE to revise its proposals to include:

    • Greater clarity on how the proposed changes would support more flexible assessment for treatments for rare and complex conditions
    • The introduction of a specific assessment pathway for rare disease treatments, supported by conditional access arrangements, including clarifying how the proposals align to the creation of the Innovative Medicines Fund
    • Mechanisms to strengthen the patient voice in decision making
    • Assurances that it will provide enhanced support to patient organisations to understand the implications of any changes that are introduced and enable them to participate fully in technology appraisals

    The SHCA will be engaging with the remaining stages of the NICE review as it progresses in 2021 and will be working with our members to ensure that the voices of patients with rare and complex conditions are heard.

  • SHCA writes to the Secretary of State for Health and Social Care calling for social care reform

    The SHCA Chairs sent a letter to the Secretary of State for Health and Social Care detailing the SHCA’s asks for social care reform, which was signed by representatives from 42 of our member organisations.

    The full letter can be read here and has been also included below:

    Dear Secretary of State

    We are writing to you as the leaders of organisations representing people living with rare and less common health conditions, many of which require support from both health and social care services. We recognise that as the Government prepares its Comprehensive Spending Review ministers will be considering the resources and policies required to deliver improvements in social care, and we want to stress the importance of effective social care services for people of all ages.

    Many of the people that we represent have rare – and sometimes genetic – conditions that they live with from birth or otherwise from a relatively young age. Indeed, many such conditions are those that might have led to an early death in the recent past, but which can now be treated effectively, thus giving people the hope of a longer life expectancy. Nonetheless, people living with these conditions may require ongoing social care support.

    Much of the debate about social care reform focuses on care for older people and how it can be paid for. However, in every year since 2015, the number of people of working age requesting social care support has increased at a faster rate than the number of older people requesting such support. Improvements in social care are just as important for these younger people as they are for older people.

    We are therefore calling on any package of social care reforms to deliver for people of all ages in five ways.

    First, social care services need to be personalised in nature, with the aim of fostering independence and ensuring people are supported to live the life they choose – including being supported to work. People should be given control over the services they receive and who provides them. Where relevant, people also need to experience a seamless handover from child social care services to adult social care services.

    Second, assessments of social care support should be aimed at delivering a high quality of life. Arbitrary and repeated assessment processes – which can lead to loss of support, disruption as people are moved between NHS and social care services, and high levels of anxiety – need to be avoided.

    Third, social care services need to be closely integrated with both physical and mental health services at both the national and local levels. Future reforms need to strengthen – rather than overlook – the support offered through NHS continuing healthcare services.

    Fourth, more specialised social care support is needed for those with particularly complex needs. People living with rare conditions, and who receive specialised care from the NHS which is organised at the national level, typically find that their social care needs are met by services at the local level with relatively little experience of the conditions they live with.

    Although important and welcome steps are being taken at the local level to join together NHS and social care – particularly for older people – people with rare health conditions often receive nationally-organised NHS services with underdeveloped links to social care services.

    Finally, social care services need to be both properly resourced and financed fairly. This means restoring social care quality and access levels to those last seen in 2009 (which the King’s Fund and Health Foundation estimate requires £8 billion a year), and further meeting the growing demands for social care from both younger and older people by investment in more capacity. It also means that reforms which help people meet the costs of social care should be available to all, regardless of their age, and regardless of whether they receive social care in residential care or in their own homes.

    We hope that the Government takes the steps we are calling for to deliver effective social care services for people of all ages.

    Yours sincerely,

    Lord Sharkey, Chair, Specialised Healthcare Alliance
    Baroness Wheeler, Vice Chair, Specialised Healthcare Alliance
    Baroness Chisholm, Vice Chair, Specialised Healthcare Alliance

    Amanda Batten, CEO of Contact and Chair, Disabled Children’s Partnership
    Amanda Mortensen, Chief Executive, Batten Disease Family Association
    Andrea Brown, Chief Executive, National Kidney Federation
    Ann Chivers, Chief Executive, Alström Syndrome UK
    Anne Keatley Clarke, CEO, Children’s Heart Federation
    Arlene Smyth, Executive Officer, Turner Syndrome Support Society UK
    Bob Stevens, Group Chief Executive, MPS Society
    Catherine Woodhead, CEO, Muscular Dystrophy UK
    Chris Bradshaw, Chair, The Dystonia Society
    Chris James, Director of External Affairs, Motor Neurone Disease Association
    Clive Smith, Chair, The Haemophilia Society
    Dr Charlotte Augst, Chief Executive, National Voices
    Dr Iain Armstrong, Chair PHA UK
    Sue Farrington, CEO, Scleroderma & Raynaud’s UK
    Georgina Carr, CEO, The Neurological Alliance
    Georgina Morton, Chairperson, ArchAngel MLD Trust
    Heidi Travis, CEO, Sue Ryder
    John James OBE, Chief Executive, Sickle Cell Society
    Karen Walker, CEO, Multiple System Atrophy Trust
    Laura Szutowicz, CEO, HAE UK
    Lisa Gagliani MBE, Interim Chief Executive, Genetic Disorders UK
    Louise Fish, Chief Executive, Tuberous Sclerosis Association
    Lucy Watson, Chair, The Patients Association
    Lynne Regent, CEO, Anaphylaxis Campaign
    Maria Piggin, Chair, PNH Support
    Nick Moberly, CEO, The Multiple Sclerosis Society
    Nick Sireau, Chair and CEO, AKU Society
    Nik Hartley OBE, Chief Executive Officer, Spinal Injuries Association
    Patricia Osborne, Chief Executive, Brittle Bone Society
    Paul Bristow MP, Chief Executive, Kidney Care UK
    Professor Lesley Kavi, Trustee and Chair, PoTS UK
    Richard Hall, Co-Founder, Liver4Life
    Robert Dalgleish, Chairman, Fanconi Hope Charitable Trust
    Sara Hunt, Chief Executive Officer, Alex, The Leukodystrophy Charity
    Simon Wigglesworth, Deputy Chief Executive, Epilepsy Action
    Stevie Tyler, CEO The Aplastic Anaemia Trust
    Susan Passmore, CEO, Prader-Willi Syndrome Association UK
    Susan Walsh, Director, Primary Immunodeficiency UK
    Tanya Collin-Histed, Director, The Gauchers Association (UK)
    Tara Parker, Director of Programmes, WellChild
    Tess Harris, CEO, PKD Charity
    Toni A Mathieson, Chief Executive, Niemann-Pick UK

  • SHCA members respond to the Chancellor’s announcement

    On the 8th April 2020, the Chancellor of Exchequer announced that charities across the UK will receive a £750 million financial support package to ensure they can continue their vital work during the coronavirus outbreak.

    Even though the announcement is extremely welcome, SHCA members – particularly those with a UK-wide, rather than a local, focus – are concerned they and others will miss out on the extra support for the charity sector, as the announcement leaves some questions regarding who is eligible for support.

    Several SHCA members have responded to the announcement expressing their concerns. Their quotes can be found below.

    Louise Fish, Chief Executive of The Tuberous Sclerosis Association, said:
    “Rare disease charities like the Tuberous Sclerosis Association are playing a vital role during the coronavirus outbreak. We’re helping 3,700 people spread across the UK who have been identified as extremely vulnerable and asked to shield for 12 weeks. Our support line advisers are working hard to answer complicated questions about how people living with Tuberous Sclerosis Complex and their families can access help and stay safe. We desperately need Government help so we can continue to support our community and reduce pressure on the NHS while many specialists are being asked to redeploy into frontline roles.”

    Fiona Loud, Policy Director at Kidney Care UK, said:
    “Like other patient support charities, large and small, Kidney Care UK has seen an enormous increase in demand for its services, whether that is information, advice, counselling or emergency financial grants. This is a vital service – many of the people we support are vulnerable and in self-isolation. They are incredibly anxious and uncertain of what the future holds – the impact of coronavirus stretches far and wide and will continue to do so in the future.”

    Lisa Gagliani MBE, Chief Executive of Genetics Disorders UK, said:
    “As an umbrella organisation for the rare and not so rare genetic condition community, our concerns are three-fold. One, our funding is entirely dependent on voluntary fundraising by the public through mass participation campaigns aimed at schools and workplaces – so we are working around the clock to adapt. Two, our campaigns fund 25 very small rare disease charity projects each year – projects which have been pledged and for which they are reliant on our campaign success, to be able to carry out their work with the most vulnerable families. Three, our capacity is stretched beyond capacity – fielding enquiries from families that have been failed by not having their vulnerabilities recognised in measures to protect them at this time. Yet, sadly I suspect, if we applied for the announced support, we’d probably be deemed ineligible!”

    Bob Stevens, Group Chief Executive of the Society for Mucopolysaccharide Diseases, said:
    “We need to ensure that financial support is made available to those small charities and patient organisations that support the rarest and often most vulnerable within our society. These specialist organisations, such as the Society for Mucopolysaccharide Diseases, are often the only ones with the expertise and that can support rare patient communities and yet are at the most risk of collapse from these financial shockwaves currently being experienced.”

    Ann Chivers, Chief Executive of Alström Syndrome UK, said:
    “Our patients are already isolated and battling on so many fronts this is beginning to become a daily struggle just to get basic needs such as food. The team at ASUK are busy arranging wrap around services, alternative people to get food deliveries, contacting local support groups who may not know about people in their area in greater need and organising at a distance, all the other basic essentials including someone to walk guide dogs. Our funds are quickly diminishing as donations dry up at a time of greater need for our community of patients.”

    Patricia Osborne, Chief Executive of the Brittle Bone Society, said:
    “Brittle bone society welcome this announcement of funding. The rare disease sector has battled valiantly against all odds to find a seat at the table of healthcare, a journey started with such enthusiasm through the UK Rare Disease Plan. If due to this current pandemic crisis small charities cease to exist, years of work will have been in vain! The hopes of quality of life and equality of care will be lost, please don’t silence the voice of the rare disease community. Ensure that funding finds its way to the many smaller charities supporting rare and undiagnosed conditions and the people who rely on them.”

    Menai Owen-Jones, Chief Executive Officer of The Pituitary Foundation, said:
    “We are a UK wide small charity, on the front line supporting vulnerable people with conditions of their pituitary gland, where the NHS simply cannot provide this support at the moment. Our helplines services especially have been inundated yet we have experienced a significant decrease in income. We are currently considering the future of our charity and possibly reducing our support services due to the severe financial outlook, even though this is when people need us the most. We need the Governments support to continue to provide the services our patients so desperately need as they have nowhere else to turn to help them at the moment.”

    Nick Moberly, Chief Executive of the MS Society, said:
    “While the £750 million package for the charity sector is welcome news, we urgently need detail on whether charities who support disabled people and those with rarer conditions are eligible for support – and how the money will be allocated. More than 130,000 people live with MS in the UK, and they are relying on us now more than ever. Demand for our services has soared during this pandemic and we’re doing all we can to be there for everyone in the community, many of whom are extremely vulnerable. It’s vitally important people with MS are protected during this crisis and we are seeking reassurance that charities like ours won’t be forgotten.”

    Andrea Brown, Chief Executive of National Kidney Federation, said:
    “The National Kidney Federation (NKF) is a national kidney patient support charity. We run a free to call helpline, which has received hundreds of calls from extremely vulnerable shielding patients requiring help and support since the COVID-19 pandemic began. The NKF would not be able to support all of these patients if it was not able to continue. Public fundraising has ceased, we are relying on donations or grants to support us and enable us to continue doing our vital work”.

    Caroline Morrice, Chief Executive of Guillain-Barre & Associated Inflammatory Neuropathies (Gain), said:
    “As a small UK wide charity supporting people with rare peripheral neuropathies, we are coping with extra demand for our help and advice. However our income comes from voluntary donations and people participating in major events such as the London Marathon, so what next? Using unrestricted reserves to keep going, but for how long and what suffers, research, or valuable awareness so people can find us in their time of need? Challenging times for charities when our support is even more important than ever!”

    Sue Farrington, Chief Executive Office of Scleroderma and Raynaud’s UK:
    “At SRUK the calls to our Helpline have trebled since the coronavirus pandemic hit – many of our scleroderma community are on the ‘extremely vulnerable’ list and have been relying on us for support and information. For people with scleroderma, symptoms can be worsened by anxiety so our priority has been to offer information across all our platforms as well as a space for people to feel less isolated during this time. We are a lifeline for our community and need as much help as possible to ensure that we can continue to provide our services.”

    Amanda Mortensen, Chief Executive of Batten Disease Family Association, said:
    “We have been waiting desperately for an announcement from the government around support for charities. It’s fantastic the government recognises the vital work the sector does. But we soon realised that we appear to ‘fall through the gaps’ of the funding. We are a small national charity working with families who have children with a rare, life limiting condition. We have never been needed more. But as we are not local (with families scattered across local authorities), we are not a hospice. We are not a large charity on the absolute frontline (although we are on the virtual and support frontline). Therefore, although small and vital, we don’t fit the current funding pots. We have a £100,000 funding gap between now and August and we are heavily dependent on community fundraising. Help!”

    Grazina Berry, CEO, The Aplastic Anaemia Trust, said:
    “As a small charity with a national reach, supporting patients and their families, dealing with aplastic anaemia, a rare life-threatening bone marrow failure, we always feel like we have to fight to be heard and to get funded so that the needs of our patient community are acknowledged, met fully, consistently and in a timely manner. Crises, like the one we’re finding ourselves in today, has only further exacerbated the problems we face day-to-day. Our patient community may be small compared to larger serious disease areas, but their needs do matter – as does our work, to ensure every patient and their carer continue to receive our support – be it obtaining and distributing swiftly consistent advice pertaining to the specific disease area or offering mental health and peer to peer support at the time of huge anxiety and even panic. We cannot even begin to think about the impact of reduced funding on research which is vital for improving treatments and finding a cure. We need help as a matter of urgency.”

    Paul Whitehouse, Chair for the Ichthyosis Support Group, said:
    “In response to the Chancellor’s announcement on support for charities, the Ichthyosis Support Group (ISG) has concerns that whilst we applaud the decision by the government to provide financial support to the charity sector, we fear that small self-funding rare disease charities such as the ISG may not fall within the criteria which denotes a beneficiary based on the current statement. We would urge the government to ensure that smaller rare disease charities can access funding. It takes years and years to establish these smaller charities and without the ability to conduct fundraising events which has been curtailed during this pandemic they can disappear overnight without continued financial stability.”

    Laura Szutowicz, CEO of HAEUK, said:
    “Obviously sources of income we have been anticipating in the form of two marathon runners raising money for us, summer events and so on are all on hold and we have had unanticipated costs such as setting up Zoom accounts so we can host virtual meetings. Many of our patients are shielding, and also many of their normal care teams have been redeployed to other areas of the NHS so we are their first line contact for advice and support, and now adding to that the loneliness and constant anxiety of the shielded people….anxiety can be a trigger for attacks of HAE, we are trying to do all we can to alleviate it but as a small organisation it can be very hard.”

    Sara Hunt, Chief Executive Officer of Alex, The Leukodystrophy Charity, said:
    “It seems to me that a fair suggestion would be a relaxation of furlough legislation for the charity sector as a whole. This would negate the need to pay support delivery staff and also ensure those that provide essential administrative and financial services can continue to work (acknowledging that their workloads are continually decreasing the longer lockdown goes on). For ourselves, we have the choice of continuing to pay these staff as long as we can until we are forced to furlough them resulting in no more beneficiary services, or laying them off (further burdening the benefits system) and asking them to work voluntarily which seems really unfair.”

    Aliya Gladyng, patient living with Sickle Cell Disease, said:
    “…simple tasks become difficult and exhausting. I found bathing, cooking, cleaning, going to the shops or even a long journey difficult and tiring”

    Shahnaz Qizilbash, Helpline Officer of Sickle Cell Society, said:
    “It has been a challenging time dealing with the emotional and practical issues that coronavirus has brought for people and families with sickle cell. As new guidance and information is emerging, it takes more time to respond to enquiries.”

    Alison Taylor, Chief Executive of Children’s Liver Disease Foundation, said:
    “At a time when we are needed more than ever to support, inform and guide our highly vulnerable families and young people through the practical and health implications of the crisis, we find our very existence is threatened. As a national charity supporting a distinct community affected by paediatric liver disease, we don’t feel we will be eligible for the government support outlined for charities. In addition each new day more children and babies are newly diagnosed with liver disease. We need a light at the end of the tunnel, we want and need to survive.”