Peter Dowd

The Committee on Medical Aspects of Radiation in the Environment (COMARE) published a report on the health effects and risks arising from sunbeds in 2009. This report included a chapter on sunbed use in the United Kingdom, and informed the 2010 Sunbeds (Regulation) Act.

In November 2024, the Department commissioned COMARE to consider the available evidence relating to the use of sunbeds in the UK, and to determine if a new review is required. This work is ongoing, and its conclusions will be made publicly available when completed.

The Department would advise that people to the follow the National Health Service guidance on using sunscreen, which is available at the following link:

https://www.nhs.uk/live-well/seasonal-health/sunscreen-and-sun-safety/

The NHS England website is clear on the benefits of sunscreen, and the importance of using sunscreen that is of factor 30 and above.

The UK Rare Diseases Framework sets a high-level strategy to focus action across the healthcare system to address the four priorities of: 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, treatments, and drugs. Integrated care boards (ICBs) are responsible for commissioning some specialised healthcare services, which help treat patients with rare diseases, whereas others are commissioned centrally by NHS England. For those specialised services commissioned by ICBs, the ICBs must commission the services in line with service specifications and standards published by NHS England. NHS England remains accountable for the effective arrangement of those specialised services.

A rare disease is defined as a disease or condition which affects fewer than one in 2,000 people within the general population. While they are individually rare, they are collectively common, and one in 17 people will be affected by a rare disease at some point in their lives.

Improving the lives of people living with rare conditions continues to be a health priority. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which are: 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, treatments, and drugs. We remain committed to delivering under the framework and will publish an annual England Action Plan in 2025, which will report on progress.

The annual England Action Plan sets out specific, measurable actions for the next year under the framework's four priority areas. To ensure delivery and accountability, each action lists an owner, the desired outcomes, and how we will measure and report on progress. We have also committed to commissioning a portfolio level evaluation of England’s Rare Diseases Action Plans to measure progress for people living with rare conditions. This evaluation is now underway, and we look forward to updating on next steps in 2025.

Improving the lives of people living with rare and ultra-rare conditions, such as rare blood disorders, continues to be a health priority. We remain committed to the UK Rare Diseases Framework, which highlights four priorities to improve the lives of people with rare diseases, including better coordination of care, and improved access to specialist care, treatment, and drugs.

We’re working hard to provide the best possible care to those living with rare blood disorders, such as sickle cell disease and thalassaemia. NHS England’s priorities for the improvement of care for rare blood disorders includes an established programme of work to improve clinical pathways and care for people with sickle cell disease, which has recently been expanded to include thalassaemia. We are also boosting Ro subtype blood donation numbers and delivering world-leading treatments, such as the new blood matching genetic test which will reduce the risk of side effects and offer more personalised care.

NHS England commissions services for patients with Thrombotic Thrombocytopenia Purpura across 11 hospitals. This is an aggressive blood clotting disease which is difficult to diagnose and has a high mortality rate if left untreated. In the acute phase of the disease patients need rapid access to specialist care. This is a lifelong condition, and patients receive ongoing monitoring by the multidisciplinary team, shared care with local hospitals, and access to specialist drugs.

The National Health Service is reviewing and updating the service specification for haemophilia care through the Blood Disorders Clinical Reference Group, alongside a new quality dashboard that will enable commissioners to monitor the quality of the services in their areas, benchmarked against other services across the country.