Asked by: Alexander Stafford (Conservative - Rother Valley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that patients with Huntington’s disease can access a wide range of NHS healthcare to manage their complex conditions.
Answered by Jo Churchill - Minister of State (Department for Work and Pensions)
The Government is committed to improving the lives of those who live with rare diseases. Patients with Huntington's disease have access to a range of services, including the services of their general practitioner, associated health professionals, neurology services, occupational therapy, speech and language therapy, local mental health services for patients and their families, palliative care where appropriate and online resources. NHS England also commissions neuropsychiatry services for adults and children which provide assessment and treatment for patients with conditions such as young onset dementia including Huntington’s disease.
NHS England continues to consider the impact of COVID-19 on patients with rare diseases and look at what services can continue to be delivered successfully through virtual communication technology such as telephone consultation and videoconferences. Where services do need to be delivered face-to-face, including the diagnosing of new cases, NHS England will work with providers to ensure that patients have a safe journey through the hospital to the treatment area.
The Government published the new United Kingdom Rare Diseases Framework in January 2021. The new Framework provides the high-level direction for rare diseases in the United Kingdom over the next five years, including four priorities that were identified using results from the 2019 National Conversation on Rare Diseases: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care; and improving access to specialist care, treatment and drugs.
The Framework will be followed by nation-specific action plans that will be developed in close consultation with stakeholders, including patient representative groups such as Genetic Alliance UK, of which Huntington’s disease Association are a member. The plans will also be supported by the continued delivery of the NHS Long Term Plan, as well as recent publications such as Genome UK which outlines the future for improving support for those with genetic rare diseases.
Asked by: Catherine McKinnell (Labour - Newcastle upon Tyne North)
Question to the Department for Education:
To ask the Secretary of State for Education, what assessment his Department has made of the economic benefits of short breaks for respite for children who need palliative care.
Answered by Vicky Ford
Palliative care can help children with life limiting or life ending conditions to have a good quality of life where they get treatment, care and support. Regular palliative care can enable parents to work and also can prevent escalation of needs later on.
While the government has not done any recent assessment of the economic benefits of short breaks for respite for children who need palliative care, local authorities have a statutory duty to assess the social care needs of disabled children and young people, and to provide respite care where necessary. Where it is appropriate, local authorities can fund respite care provided by hospices, either as a short-term stay or as a service provided to the child or young person in the family home by the hospice team. Local authorities and Clinical Commissioning Groups regularly liaise to plan and commission the most appropriate package of respite care for the children and young people with a life-limiting or life-threatening condition in their area.
Asked by: Steve McCabe (Labour - Birmingham, Selly Oak)
Question to the HM Treasury:
To ask the Chancellor of the Exchequer, if he will allocate additional resources to local authorities in the Comprehensive Spending Review to enable them to fund short respite breaks for children who need palliative care.
Answered by Steve Barclay - Secretary of State for Environment, Food and Rural Affairs
The Chancellor has announced that the Comprehensive Spending Review (CSR) will be published this Autumn. Funding for local authorities for children’s care and other services will be set out as part of CSR. The Government recognises the importance of providing support for children and families undergoing palliative care and will continue to engage with Councils to understand their pressures and assess the need for further support.
Asked by: Darren Jones (Labour - Bristol North West)
Question to the Department for Education:
To ask the Secretary of State for Education, what funding the Government provides to support the siblings of children with palliative care needs who meet the definition of being young carers.
Answered by Nadhim Zahawi
The government is committed to supporting young carers - to improve their health and wellbeing, and to protect them from excessive or inappropriate caring responsibilities. Since April 2015, all young carers are entitled to an assessment of their needs for support, under Section 17 of the Children Act (1989).
The ‘carers action plan’, a two-year programme of tailored work to support unpaid carers of all ages, aims to improve the identification of young carers; improving their educational opportunities and outcomes; providing support to young carers, particularly to vulnerable children; and improving access to services. The plan can be viewed here: https://www.gov.uk/government/publications/carers-action-plan-2018-to-2020.
In December 2016 the National Institute for Health and Care Excellence published the guidelines ‘End of life care for infants, children and young people with life-limiting conditions: planning and management’. The guidance emphasises the need to be aware that siblings will need support to cope with: their brother's or sister's condition and death, and the effects of their parents' or carers' grieving. This may include social, practical, psychological and spiritual support. The guidance can be viewed here: https://www.nice.org.uk/guidance/ng61.
The Department for Education provides schools with £2.4 billion each year in additional funding through the pupil premium to support disadvantaged pupils; each eligible pupil attracts £1,320 to primary schools and £935 to secondary schools. Eligibility for the pupil premium is based largely on current or past claims for free school meals. Some research with young carers aged 14 to 16 suggested that around 60% already attract the pupil premium through their eligibility for free school meals.
We expect schools to make effective use of their pupil premium and do not tell them how to use it - schools know their pupils best and will spend the grant to meet pupil needs, which may include needs arising from a caring role. Schools are held to account for their pupil premium use through school inspection and information in performance tables, and most schools are required to publish details about their pupil premium strategy and its impact.
Asked by: Catherine McKinnell (Labour - Newcastle upon Tyne North)
Question to the Cabinet Office:
To ask the Minister for the Cabinet Office, with reference to the Written Ministerial Statement of 16 November 2017, HCWS 258 on social care, whether the Government plans to bring forward proposals on the future of children’s social care and services for children who need palliative care.
Answered by David Lidington
The Government’s strategy for children’s social care was set out in ‘Putting Children First’, published in July 2016. A copy is available at:
In July 2016, the Government set out its commitment to everyone at the end of life in the Government response to the independent Review of Choice in End of Life Care. Our commitment on end of life care set out what everyone should expect from their care at the end of life and the actions we are taking to make high quality and personalisation a reality for all, both adults and children, and to end variation in end of life care across the health system by 2020. On 21 September 2017 we published ‘One year on: the Government response to the review of choice in end of life care’ setting out the good progress made in delivering this over the first year.