Asked by: Michael Payne (Labour - Gedling)
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 help reduce the waiting times for diagnosis of (a) autism and (b) ADHD for children and young people.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
It is the responsibility of the integrated care board (ICBs) to make available appropriate provision to meet the health and care needs of their local population, including autism and attention deficit hyperactivity disorder (ADHD) assessments, in line with relevant National Institute for Health and Care Excellence guidelines.
On 5 April 2023, NHS England published a national framework and operational guidance to help ICBs and the National Health Service to deliver improved outcomes for children, young people, and adults referred to an autism assessment service. Since publication, NHS England has been supporting systems and services to identify where there are challenges for implementation and how they might overcome these.
In respect of ADHD, NHS England has established an ADHD taskforce, which is working to bring together those with lived experience with experts from the NHS, education, charity, and justice sectors. The taskforce is working to get a better understanding of the challenges affecting those with ADHD, including timely and equitable access to services and support, with the final report expected in the summer of 2025.
Asked by: Michael Payne (Labour - Gedling)
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 people with Ehlers-Danlos Syndrome receive adequate medical support.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of those living with rare diseases, such as Ehlers-Danlos Syndrome (EDS). The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, which include better coordination of care and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework and published the fourth annual England action plan on 28 February 2025, which reports on progress.
NHS England commissions some specialist services for patients with EDS, which are currently delivered by two centres in England, namely the London North West University Healthcare Trust and the Sheffield Children’s NHS Foundation Trust. The complex EDS service provides diagnosis and advice to referrers on the treatment and management of complex cases.
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to (a) utilise the complex patient access scheme to make Ruxolitinib available on the NHS and (b) consider other options for vitiligo patients to receive that medication.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
It is for the marketing authorisation holder to propose a complex patient access scheme for a medicine being evaluated by the National Institute for Health and Care Excellence (NICE), which would then be considered by the NICE and NHS England through the established process. The marketing authorisation holder has proposed a commercial agreement for ruxolitinib but the NICE was unable to recommend it as a clinically and cost effective use of National Health Service resources at the price proposed in its final draft guidance, published in July 2024. A number of organisations appealed against the draft guidance. The NICE has not yet published final guidance, and its Appraisal Committee will consider the upheld appeal points at a future meeting, scheduled for 14 May 2025. The NICE is open to working with NHS England to ensure that commercial arrangements that are operationally manageable for the NHS can be taken into account.
Where the NICE does not recommend a treatment as a clinically and cost-effective use of NHS resources, it will not usually be routinely funded by the NHS. NHS commissioners are, however, required to consider exceptional funding requests for individual patients.
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential impact of (a) public health services and (b) adult social care on demand for (i) primary and (ii) acute NHS services.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
42 integrated care boards (ICBs) across England are responsible for meeting the healthcare needs and demands of their respective populations. There is evidence that public health and adult social care interventions of different kinds can be effective, and cost-effective, in preventing or delaying the onset of ill health, which in turn supports better use of health and care resources. A shift from treatment to prevention and from acute hospital services to community are part of the three strategic shifts underpinning our 10-Year Health Plan.
We also recognise the need to alleviate pressures through increasing supply and reducing demand. We will make sure the future of general practice is sustainable by training more general practitioners, guaranteeing a face-to-face appointment for all those who want one and delivering a modern booking system. For example, in the NHS Derby and Derbyshire ICB, 539,000 general practice appointments were delivered in December 2024, up from 510,000 in December 2023. Additionally, in early 2025, the Government will publish a plan setting out how urgent and emergency care services across England will be supported to deliver improvements.
Furthermore, for 2025/26, approximately £9 billion will be committed to the Better Care Fund (BCF), a framework for ICBs and local authorities to make joint plans and pool budgets for the purposes of delivering better joined-up care. This includes around £3.3 billion provided to local authorities and £5.6 billion to ICBs.
Its main objectives are to support:
- the shift from sickness to prevention;
- people living independently; and
- the shift from hospital to home.
These objectives should reduce demand on services, and the recently revised BCF framework, published on 30 January 2025, sets out the actions that local authorities and ICBs should take to achieve these objectives, including improving discharge, preventing avoidable admissions, reducing the pressure on social care, intermediate care, unpaid carers and housing.
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help (a) provide timely (i) diagnosis and (ii) treatment and (b) improve other support for adults with autism.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
It is the responsibility of integrated care boards (ICBs) to make available appropriate provision to meet the health and care needs of their local population, including autism assessments and support services for autistic people, in line with relevant National Institute for Health and Care Excellence (NICE) guidelines.
On 5 April 2023, NHS England published a national framework and operational guidance to help ICBs and the National Health Service to deliver improved outcomes for children, young people, and adults referred to an autism assessment service. The guidance also sets out what support should be available before an assessment and what support should follow a recent diagnosis of autism based on the available evidence.
Asked by: Michael Payne (Labour - Gedling)
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 improve the care of people with Addison's disease including (a) providing clearer information and (b) ensuring timely access to (i) treatment and (ii) support.
Answered by Andrew Gwynne
The Government is committed to improving the lives of those living with rare diseases, such as Addison’s disease. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, which include increasing awareness of rare diseases among healthcare professionals and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework and will publish an annual England action plan in 2025.
The National Institute for Health and Care Excellence’s (NICE) Clinical Knowledge Summaries (CKS) provide primary care practitioners with a readily accessible summary of the current evidence base and practical advice on best practice. Currently, the NICE has a CKS on Addison’s disease. This includes when to suspect Addison’s disease, a management section, and a self-care advice section to support both patients and family members or carers. Further information on the NICE’s CKS on Addison’s disease is available at the following link:
https://cks.nice.org.uk/topics/addisons-disease/management/
NHS England has previously published a National Patient Safety Alert on Steroid Emergency Card to support the early recognition and treatment of an adrenal crisis in adults. These alerts require action to be taken by healthcare providers, to reduce the risk of death or disability. Further information on the alert is available at the following link:
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that (a) patients requiring Creon are updated on the availability of that medication and (b) local guidance issued by (i) his Department and (ii) NHS England is shared with patients.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The Department has been working with suppliers, NHS England, and national clinical specialists to address the current supply issues with Creon, which is a brand of pancreatic enzyme replacement therapy. Comprehensive guidance has been issued to the National Health Service and is being regularly reviewed and updated as the supply situation changes. This guidance includes information clinicians can share with patients, and refers to advice from patient groups aimed at supporting patients in managing the supply issues and addressing their questions.
The Department has not issued any local guidance on this supply issue, but has issued a National Patient Safety Alert in December 2024, with an action for integrated care boards to put in place a local mitigation plan for instances when patients are unable to obtain stock from their community pharmacy or dispensing general practice. In all cases of medicines supply issues, healthcare professionals should endeavour to communicate any supply issues and relevant information about resupply dates and the proposed management plan clearly with patients. They should also undertake counselling to support affected patients where possible.
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many open dentistry practices were accepting adult NHS patients in Gedling constituency (a) on the most recent date for which data is available and (b) in 2010.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
While the data requested is not available for 2010, as of 10 July 2024, there were 13 open dentistry practices in the Gedling constituency, two of which were showing as accepting new adult patients. This data is sourced from the Find a Dentist website, and is matched to constituencies based on the postcode data shown on the website, which is available at the following link:
https://www.nhs.uk/service-search/find-a-dentist
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he plans to take to support community pharmacies in Gedling constituency.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Pharmacies play a vital role in our healthcare system. We are committed to expanding the role of pharmacies and better utilising the skills of pharmacists and pharmacy technicians, including by cutting red tape. That includes making prescribing part of the services delivered by community pharmacists. We are currently consulting with Community Pharmacy England on the national funding and contractual framework arrangements, including in Gedling, for 2024/25.
Asked by: Michael Payne (Labour - Gedling)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to (a) increase research funding, (b) improve access to specialist care and (c) provide better support for (i) people living with motor neurone disease and (ii) their families.
Answered by Andrew Gwynne
The Government’s responsibility for delivering motor neurone disease (MND) research is shared between the Department of Health and Social Care, with research delivered by the National Institute for Health and Care Research (NIHR), and the Department of Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI). Significant recent investments include, but are not limited to, £12.5 million to support the best science in the UK Dementia Research Institute, £8 million for early phase clinical research and the Experimental medicine Route To Success in amyotrophic lateral sclerosis platform trial, and £6 million for the MND Translational Accelerator. In 2022, Government funders also published a joint NIHR and Medical Research Council Highlight Notice, inviting researchers across the academic and life sciences sector to submit applications via open call. The MND Highlight Notice invites proposals for research to address important health and social care questions, and seeks to increase the amount of MND research funded.
NHS England commissions the specialised care and treatment that patients with MND may receive from the 24 specialised neurology centres across England. NHS England has published a service specification setting out national standards for organisations that provide specialised neurological care. This sets out that the service should improve the quality of life and the experience of the services for patients and their carers. The support provided includes the provision of multi-disciplinary care from specialist clinicians, including neurologists, specialist nurses, speech and language therapists, dietetics and nutrition, and physiotherapy, depending on individual clinical need. Further information is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf
At the national level, there are a number of initiatives supporting service improvement and better care for patients with MND, including the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England has also established a Neurology Service Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services, including MND.
In addition, NHS England commissions a specialised communication aids service known as Augmentative and Alternative Communication, as set out in the published service specification. This service supports individuals with rapidly degenerative conditions, including MND, who are prioritised for this service. Further information is available at the following link: