The NHS 10-year plan: What does it mean for the IMD community
This article highlights the most relevant elements of the NHS 10-year plan for people with IMDs. As more details emerge, we will update this page.
In July the UK government published its NHS 10-year plan, outlining the ambitious changes that it wants to make to ensure that the NHS is fit for the future.
Spanning over 170 pages, the plan proposes a radical shift to how healthcare will be delivered. Innovations in technology will drive improvements in disease prediction and help make the NHS more accessible. This will be combined with changes to the ideologies behind the way in which the NHS is run to make it more ‘people centred’, giving patients more empowerment to control their own care. Together, this will create a health care system that focuses more heavily on preventative care. At first glance, this does not necessarily seem to benefit people living with IMDs as IMDs cannot necessarily be prevented.
The plan also leaves key questions about how care for people with IMDs will be affected. The rare disease and the IMD community get little direct attention in the NHS 10-year plan, with only the hope that the time to diagnosis will be reduced with the wider implementation of genomic testing.
Whilst another piece of policy the Rare Disease Framework does cover some of the rare communities needs more directly, it has its critics in its current form, and the government has yet to commit to the renewal of this framework after it expires at the beginning of 2026. We will continue to push for its renewal to ensure that we will get a co-produced Rare Disease Framework that we can trust, with sustainable planning that centres on delivering high quality care and supporting our community to live well every day.
As for the NHS 10-year plan, no new funding is attached to the proposed changes in this plan, so how will it actually happen? With limited detail on how changes will be delivered exactly when and even if these changes will be implemented remains largely unclear.
Increasing the use of technology:
Genomics
The NHS is increasing its Genomic power, and this is specifically relevant for IMDs. Whole genome sequencing can facilitate the earlier diagnosis of some rare conditions. This leads to earlier intervention and treatment and hopefully better condition management. In some cases, the disease can even be pro-actively managed months or years before symptoms begin to show and medical crisis arise.
Whole genome sequencing is currently being offered to 100,000 newborn babies as part of The Generation Study, this currently screens for over 200 rare diseases about half of which are IMDs. It is proposed as part of the NHS 10-year plan that this pilot study will be extended to all newborn babies, hopefully reducing the ‘diagnostic odyssey’ for many people with IMDs.
Wearable health tech
It is hoped that wearable technologies will become standard in preventative chronic and post-acute NHS treatment. Whilst no clinically validated wearable health tech exists for IMDs at this time, it is possible that they will become common place in the future. For example, several metabolic disorders have the potential to lead to hypoglycaemia and blood glucose monitors in these contexts could mirror the success of the monitors used in diabetes management.
In the future, it may be possible for data to be shared with health care professionals to allow for continuous monitoring on virtual wards. This will make proactive management the new normal, allowing clinicians to reach out at the first signs of deterioration to prevent emergency admissions to the hospital. However, it is important to note that these technologies have yet to be clinically validated in an IMD setting.
NHS App
The government intends to transform the NHS App into a ‘digital front door’ to the NHS. They predict with the additional functionality of the app, it will become a ‘doctor in your pocket’ and will help people to navigate the entire NHS system with ease.
With full functionality expected in 2035, new features will be added to the app each year many of which will be useful to the IMD community:
My Specialist: Self-referrals to specialist care and the ability to leave a non-urgent question for a specialist.
My Care: A hub for managing care, which is particularly useful for people with long term health conditions and complex needs. This will include a place to find and review care plans, book and manage appointments, enrol in clinical trials and access their Single Patient Record.
My Medicines: Manages repeat prescriptions and sets reminders to take medicine especially if it is part of a complex regime.
My Consult: Platform for remote consultations.
My Children: Parents can store and track all of their child’s health information and will provide advice and support for parents throughout childhood.
My Carer: Securely prove that they are providing care and gain access to the data related to the person that they care for. Helps carers to book appointments and communicate with their loved one’s care team. Streamlines care responsibilities whilst giving carers the means to seek advice or reassurance from professionals.
My NHS GP: AI assisted non-emergency triage. Takes descriptions of worries and symptoms and then asks the right follow up questions to provide personalised guidance including booking appointments.
My Choices: Search for and choose providers based on patient reported outcomes and patient reported experience. Helps patients choose a provider based on what is most important for them: user satisfaction, shortest wait time, closest to home.
Ensuring a more seamless service
Increasing access to specialists
Over the next three years, the NHS plans to implement 1,000 additional specialty training posts, though it is unclear how many of these will support IMD care. The NHS is also making a clearer pathway for experienced specialty doctors to develop and operate at a specialist level and to become consultants.
Technology will also expand access to specialist advice. The ‘My Specialist’ section of the NHS app will allow people with an IMD to receive specialist care at home, through self-referral or leaving a non-urgent question for a specialist to respond to without having to make an appointment.
Furthermore, the e-referral scheme, where GPs can ask specialist doctors for expert advice and guidance ensures that people with an IMD receive the highest quality advice without the need to visit a hospital.
The single patient record
The single patient record aims to simplify patient records, with all medical records being stored in a single, secure, accessible place. This will allow all health care professionals from clinicians, to paramedics, to pharmacists to have a complete record of the person with an IMDs history, needs and preferences.
This will act as a ‘patient passport’ within the NHS making sure that people with an IMD get seamless care no matter where they are in the NHS. This will hopefully mean no more repeated stories and no more appointments where the clinician does not know what happened at the previous one.
This information will be easily accessible to the people with IMDs themselves as part of the ‘My Care’ section of the NHS App.
The Neighbourhood Health Service
A major headline from the NHS 10-year plan is that more care should be moved out of hospitals and into the community. The core principle is that care should happen as locally as possible. Digitally by default, in a person’s home, if possible, in a Neighbourhood Health Centre where needed and only in a hospital when necessary. It should be noted that many areas of IMD care may still need to be done in a hospital, and we hope that funding for these services will not be affected.
It is predicted that the Neighbourhood Health Centres will be open 12 hours a day, 6 days a week and will start to be set up in the next 3 to 4 years. The government predicts that the Neighbourhood Health Centres will replace outpatient care by co-locating many different specialists within these centres.
This will hopefully benefit the IMD community in several ways, firstly any care such as clinic visits or physiotherapy that can be done in the community, will be done closer to home. This may reduce the travel time and expenses for these services. It is also hoped that these sessions will be co-located and organised on the same day to increase the coordination of care. Finally, where hospital visits are necessary, it is hoped that with many other people using the Neighbourhood Health Services, hospitals will be under less stress ultimately improving access for the IMD community when they need it.
Improving the care choices:
Agreed care plans
By 2027, 95% of people with complex needs, which will likely include some people with IMDs, will have an agreed care plan as part of the NHS 10-year plan. Care plans are vital in enabling seamless care. All new care plans will be co-created with people with an IMD (and parents/carers where necessary).
These care plans will be designed to cover the person with an IMD’s holistic needs and will align with standards for high quality care, whilst putting the person with an IMD at the centre, with significant freedoms and choice to dictate how their care is administered.
Personal health budgets
Personal health budgets may help people with an IMD to manage how their health and care needs are met. When given a personal heath budget a person with an IMD is told how much money is available for their assessed needs and then they work with their care team to decide how to spend it. For example, they may choose to spend their budget on physiotherapy or on mobility aids or on activities that help them to become more involved in the community.
The NHS 10-year plan aims to double the people offered a personal health budget by 2028 and at hopes to offer this to at least 1 million people by 2030. At the end of the 10-year plan, they wish to ensure it is a universal offer to all who may benefit.
How exactly the NHS 10-year plan will be implemented and what effect it will have on the status of IMD care, is still largely unknown. We will continue to update this page as more information becomes available.
If you have questions or need support please do not hesitate to contact us on 0800 652 3181 or at contact@metabolicsupport.org
Want to read more! Check out The NHS 10-year plan
