Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps is she taking to provide people living with a rare disease equitable access to (a) diagnosis, (b) treatment, and (c) care.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities collaboratively developed with the rare disease community: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatments and drugs. The principles of the UK Rare Diseases Framework commit the four nations to “ensure any impacts on health inequalities are considered when developing action plans”.
Each year since 2021 we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year’s and previous years’ action plans that relate to equitable access to diagnosis, treatment, and care.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what plans her Department has to (a) establish and (b) fund an avoidant restrictive food intake disorder pathway.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
Commissioning pathways for avoidant restrictive food intake disorder (ARFID) are locally determined by integrated care boards. NHS England advises that all eating disorder teams should work collaboratively with other children and young people’s community teams to address coexisting and co-occurring conditions as needed.
NHS England recognises the importance of patient-centred care, and that care is tailored to meet the needs of children and young people with varied presentations, including ARFID. The children and young people’s eating disorder guidance is being updated to reflect this, with publication expected later in 2024.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to improve the (a) diagnosis rate and (b) management of Tumour Induced Osteomalacia.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
While the Department is not taking steps to ensure early diagnosis of tumour induced osteomalacia specifically, the 2021 UK Rare Diseases Framework aims to improve the awareness of all rare diseases which includes this condition. England’s second Rare Diseases Action Plan, published in February 2023, reports on progress made to help patients get a final diagnosis faster and outlines new actions such as commissioning research on how best to measure the diagnostic odyssey.
The Department asked the National Institute for Health and Care Excellence to carry out a single technology appraisal of burosumab for treating FGF23-related hypophosphataemia in tumour-induced osteomalacia, but the company was not in a position to apply for a marketing authorisation from the Medicines and Healthcare products Regulatory Agency for this indication and so assessment has been suspended.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to improve the (a) diagnosis and (b) treatment of X-linked hypophosphatemia.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Genomic testing in the National Health Service in England for hypophosphataemia is currently included in the National Genomic Test Directory under the clinical indication labelled R154. X-linked hypophosphatemia is one of 200 treatable rare conditions being included in the Generation Study, a landmark research study which will sequence the whole genomes of 100,000 newborn babies being led by Genomics England in partnership with the NHS.
The study will evaluate the utility and feasibility of using whole genome sequencing to screen newborn babies for a larger number of childhood-onset rare genetic conditions in the NHS, with a decision whether this should be rolled out now or in the future based on the relevant evidence.
National Genomics Education has also developed GeNotes, which puts innovative educational resources on genomics and rare diseases at the fingertips of healthcare professionals. GeNotes includes information on hypophosphatemia to support healthcare professionals to identify and manage forms of hypophosphatemia such as X-linked hypophosphatemia.
Burosumab is now recommended and available on the NHS for treating X-linked hypophosphataemia in children and young people who are still growing. This novel treatment addresses the underlying problem, rather than compensating for phosphate loss, so is effective in helping children to grow normally.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she has had discussions with NICE on their decision not to recommend using burosumab in the treatment of (a) X-linked hypophosphatemia and (b) related disorders in adults.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department has had no discussions with colleagues in the National Institute for Health and Care Excellence (NICE) regarding burosumab. NICE is an independent body and its recommendations are developed in accordance with its published methods and processes.
NICE has not yet published final guidance on the use of burosumab for the treatment of X-linked hypophosphataemia in adults. NICE’s draft guidance was recently subject to a public consultation and NICE will take the comments received fully into account in developing its final recommendations.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment her Department has made of the potential merits of extending the eligibility criteria for (a) the Queen's Platinum Jubilee Medal and (b) HM the King's Coronation Medal to include ambulance support staff.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Individual Government departments are responsible for making eligibility decisions regarding the award of each Medal to staff of organisations that fall under their sponsorship. To qualify for the Platinum Jubilee Medal, emergency services personnel were required as part of their conditions of service, to have frontline responsibility for attending the scene of 999 calls. This was consistent with criteria that applied to the Diamond Jubilee Medal.
The same criteria apply to the Coronation Medal. The Coronation Medal will also be awarded to individuals who actively contributed to the official Coronation events. There are no plans to change the eligibility criteria for either Medal.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to provide funding to increase the number of staff in the breast cancer screening workforce.
Answered by Neil O'Brien
NHS England is continuing to take forward priorities identified in the Cancer Workforce Plan Phase 1 by investing an additional £50 million in 2022/23 to further expand the cancer and diagnostics workforce, including to support the earlier diagnosis of cancer.
Asked by: Lisa Nandy (Labour - Wigan)
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 increase the uptake of breast screenings in Wigan constituency.
Answered by Neil O'Brien
In the Wigan locality the Cancer Screening Improvement Lead (CSIL) has undertaken a wide range of activities and interventions to increase the uptake of breast screening. Some examples of the work being undertaken in Wigan include:
- general practitioner (GP) practice visits and training sessions for practice staff in line with the screening round plan. On-going work with GP Practices to contact non-responders/DNAs. Sharing list of DNAs with GP Practice;
- practices who have received a visit around the time their patients are due to be called have seen an improvement in uptake from one to 17% when compared to the previous screening round;
- targeted intervention with the lowest performing practice in Wigan by sending postcards to non-responders to ascertain the barriers to attendance, including information on how to rebook an appointment. This has resulted in at least a 3% increase in attendance compared to the previous screening rounds;
- additional training sessions to Primary Care Network Nurses and new GP assistants;
- a number of interventions to support patients with learning difficulties to access screening;
- work with local community groups, e.g., Women’s Institute, local veteran centre, local parish councils, Wigan and Leigh Council for Voluntary Service, local disability groups, LGBTQ+ groups;
- accompanied a local outreach nurse to visit local sex workers and the gypsy/traveller community; and
- delivered awareness sessions within the community at a variety of venues.
The Wrightington, Wigan and Leigh NHS Foundation Trust has also benefited from the additional national £10 million invested in breast screening services and will be receiving an additional static screening unit.
Asked by: Lisa Nandy (Labour - Wigan)
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 create convenient, flexible routes into breast cancer screening services.
Answered by Neil O'Brien
We have invested £10 million for breast screening programme which will provide 28 new breast screening units to be targeted at areas with the greatest challenges of uptake and coverage, including Wigan. This will provide extra capacity for services to recover from the impact of the pandemic, boost uptake of screening in areas where attendance is low, tackle health disparities and contribute towards higher early diagnosis rates in line with the NHS Long Term Plan.
Asked by: Lisa Nandy (Labour - Wigan)
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 NHS funding for research into childhood brain tumour is ring-fenced.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
It is not usual practice to ring-fence funds for particular topics or conditions. The Department funds research through the National Institute for Health and Care Research (NIHR) and the NIHR welcomes funding applications for research into any aspect of human health, including childhood brain tumours. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.