Tag Archives: Department of Health and Social Care

The Rare Diseases Action Plan: A refreshing focus on implementation

GK Strategic Adviser and former health minister Steve Brine examines the government’s new Rare Diseases Action Plan and its impact on people living with rare diseases.

As someone who has spent many years engaged with health policy, both inside and outside government, I was genuinely heartened to see the England’s Rare Diseases Action Plan published to mark Rare Disease Day last month.

This fifth annual plan builds on the UK Rare Diseases Framework and sets out clearly how we intend to turn the strategic priorities I first produced as the minister into real improvements in people’s lives.

Rare diseases may, individually and as the name suggest, be uncommon – but collectively they affect a significant number of people – and even more indirectly via family members.

I have always been acutely aware how too many families face what is heartbreakingly called a ‘diagnostic odyssey’; years of uncertainty, multiple referrals, and repeated explanations before a condition is recognised and understood.

This isn’t just about medicine; it’s about dignity, continuity of care, and basic fairness across the NHS.

The new 2026 Action Plan wisely positions itself as a practical implementation of the Rare Diseases Framework’s four core priorities:

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.

But it does much more than repeat them, it brings them to life in the context of the Government’s 10 Year Plan for the NHS in England.

At its core, the plan seeks to show how system-wide reform – from digital transformation to community-based care – can make a real difference for people living with rare conditions.

One of the most meaningful aspects of this year’s plan is its emphasis on health equity, something ministers often say is central to their health mission.

For too long, people living with rare diseases have experienced variation in the care they receive, depending on where they live or what their condition is.

This is not unique to this cohort of patients of course but, for the first time in an action plan of this kind, the system explicitly recognises rare disease as a health inequality, and commits to addressing this through better data, targeted improvement work, and integration with NHS England’s longstanding approach to tackling inequalities.

This marks an important shift – one that sits right at the heart of a modern health service, and was important to me when drawing together the original priorities.

On the diagnostic front, progress is evident but needs to go further and faster.

The NHS Genomic Medicine Service now delivers genomic testing for more than 7,000 rare conditions, and there’s a renewed focus on significantly shortening that ‘odyssey’.

The re-procurement of the NHS Genomic Medicine Service (GMS) from April 2026 is welcome as is the suggestion, something I wish I had been able to do, the new contracts will give certainty and run for ten years from this spring.

What this renewed GMS should deliver is a forward-looking contract which embeds genomic technology into standard clinical pathways and, in-turn, makes a positive impact on diagnosis delays.

Last year also saw the establishment of pilot clinics for people with undiagnosed rare diseases that bring many more services ‘under one roof’.

Two of these pilot centres – one in the north and one in the south of England – are expected to be operational by autumn 2026. Their purpose is simple but should make a big difference; to give people who have exhausted standard lines of diagnosis a new path to understanding what’s wrong. This brings vital hope.

Coordination of care remains a longstanding challenge for people with rare conditions, for whom the term comorbidity was coined. This requires input from a range of specialists and can be very challenging for a health system such as the NHS.

To answer this, NHS England is looking at models of care that support rare disease collaborative networks (28 of which now exist) to join things up and bring that consistency across services.

Another significant advance is the work being done on so-called ‘novel’ therapies.

Regulators like the Medicines and Healthcare products Regulatory Agency have made commitments to change how rare therapies are treated, with a view to facilitating more timely access to the latest treatments.

These are the sorts of advances that not only push scientific boundaries, but also give real hope to individuals and families living with rare conditions. We need to see, soon, the first patient treated by one of these therapies to keep momentum in this space.

Of course, none of this has happened by accident. Central to the 2026 Action Plan’s development and delivery has been the voice of the rare disease community.

I launched the ‘National conversation on rare diseases’ in 2019 which gathered over 6,000 responses across the UK and directly informed the four priorities being settled upon.

This time, patient organisations, clinical experts and charities seem to have again provided insight, and lived experience, ensuring the new plan lands with the credibility it must have to be successful.

I have tried to be positive in this piece – and there is much to be positive about – but we shouldn’t fool ourselves there isn’t a LOT of work to be done.

Today, only around 5 % of rare conditions have an approved and effective treatment, and for too many people the journey towards diagnosis is more long wandering road than ‘odyssey’ which suggests an adventure eventually leading somewhere good.

This plan isn’t the endpoint – and it’s not meant to be. It is the next part of a long-term commitment which builds on the work I did, which in itself built on the 2013 UK Strategy for Rare Diseases.

Credit to the current team of health ministers, across the UK, who have agreed to further extend that work giving us further chances to address unmet need and prepare for the future.

As someone who has seen both the frustrations and the progress in this policy area over many years, I welcome the clarity, ambition and practical focus of the 2026 Action Plan.

At a time when Ministers in this government are (rightly) criticised for producing grand plans without much of a nod to implementation, it is refreshing indeed.

Health and welfare reform – will work, work?

The government has made its stance on health and welfare clear. The overarching narrative underpinning the Department for Work and Pensions’ (DWP’s) green paper on welfare reform, published in March 2025, is ‘good work is good for health and being out of work can worsen health’.

Coupled with the Secretary of State for Health and Social Care Wes Streeting’s recent comments that an over-diagnosis of mental health conditions is preventing people from working, it is evident that the government sees work as a key component of the welfare state.

This marks a distinct shift in how work, health and welfare have historically interacted in policymaking. Where once the welfare system was seen primarily as a safety net, it is now being recast as a springboard that supports individuals back into the labour market.

The government recognises that something has shifted in the labour market post-Covid-19. There has been a 45% increase in health-related benefits claimants since 2019-20 and more than 9.3 million people out of work. There are swathes of statistics which demonstrate that Britain’s workforce has not fully recovered from the pandemic and the current level of sickness and absenteeism is unsustainable.

Given the scale of the issue, the government has sought to identify how improving health outcomes might support people into work and enable them to stay there. Ideas such as offering weight loss jabs, dubbed ’jabs for jobs’, were floated at the end of last year. This gives a clear signal that the government is keen to encourage people back into the workplace and is open to non-conventional methods of doing so.

While DWP consults industry and businesses on its planned welfare reforms, an opportunity has arisen for those focused on supporting the government’s vision for work and welfare. Employers should be prepared to play a larger role in supporting the workforce to remain engaged in the labour market. This offers significant opportunities for occupational health providers who can support employers to promote the health and wellbeing of their staff.

Schemes such as mental health and wellbeing programmes will become increasingly common in employment offerings as businesses take on a growing role in a broader, work-led approach to welfare. Occupational health providers who can help fill this gap between welfare, health and long-term employment are well placed to help facilitate the government’s policy objectives.

Reducing economic inactivity is a key priority for the government in its mission to kickstart growth. By implementing supportive workplace schemes and collaborating with private occupational health providers, employers can not only improve individual outcomes but also contribute to broader societal and economic resilience.

The question now for policymakers is exactly how occupational health providers can support businesses to deliver on the government’s objectives for welfare reform. Ministers, civil servants and parliamentarians are keen to understand the art of the possible and how they can work with providers to support workers to remain as active participants in the UK’s workforce.

Please contact Lauren Atkins (lauren.atkins@gkstrategy.com) if you would like to discuss occupational health and the government’s welfare reforms in more detail.

GK Strategy in Conversation with Steve Brine and Richard Meddings

GK Strategy was pleased to host former Chair of NHS England Richard Meddings and former health minister and Chair of the Health and Social Care Committee Steve Brine for an ‘in conversation with’ discussion on Thursday 15 May to examine some of the challenges facing the government, the Department of Health and Social Care and the NHS 10 months into Labour’s term in office.

Meddings and Brine took a deep dive into a range of issues affecting the health and social care sector, exploring the implications for investors and service providers. From funding pressures to the abolition of NHS England, the discussion drew on our speakers’ extensive experience to evaluate the road ahead for the health system and the reforms the government will need to deliver to meet its ambitious policy objectives.

Much of the discussion focused on the NHS and the role of ICBs in a reformed health system following the announcement that NHS England would be abolished. There was agreement that health secretary Wes Streeting had received a tough inheritance, including mounting pressures on the health service and a poor fiscal climate making a significant injection of additional funding unlikely. The panellists highlighted the urgent need to redesign governance frameworks that better meet the demands of a modern health service.

Meddings and Brine spoke in detail about the role of technology in reforming the delivery of healthcare. They agreed there needs to be a steady stream of investment to maximise the increasing role AI will play in improving patient care and delivering efficiency savings within the NHS. The pair emphasised the need for Streeting to secure the ear of Chancellor of the Exchequer, Rachel Reeves, who they argued will need to prioritise health targets despite a constrained financial budget.

The two panellists agreed that reducing the elective care backlog and meeting the 18-week referral to treatment target was the key retail offer to voters at the general election and will be the main health priority for the government. This is despite wider initiatives that might have more significant long-term outcomes for the health of the UK’s population. Other short-term priorities for the NHS that were discussed included reducing the number of people in urgent care, increasing access to primary care, and improving cancer detection rates.

Towards the end of the session, the discussion shifted to the upcoming 10-Year Health Plan which will set out the government’s healthcare reforms in detail. Meddings and Brine agreed it is likely to prioritise prevention, the shift from hospital-based to community care and greater digital integration, which were the three ambitions put forward by Labour pre-election. The panellists highlighted that meaningful progress will depend on early intervention strategies and targeted investment, particularly in tackling obesity, cancer and mental health challenges.

For investors and stakeholders, the panel’s message was clear: steady investment in health, coupled with a pragmatic embrace of technology and AI presents a significant opportunity to reshape the delivery of healthcare at a time when demands on the NHS continues to rise.

Health, social care, and life sciences is one of the GK’s core sectors. GK supports a range of businesses and investors to navigate the political, policy and regulatory landscape and help them to realise their commercial objectives. Please get in touch if you would like to discuss the impact of politics and policy on your business or investment decisions.

Unpacking the government’s 2025 mandate to NHS England

At the end of January, Secretary of State for Health and Social Care Wes Streeting delivered the government’s 2025 mandate to NHS England. This is a crucial document which sets out the health secretary’s goals for the health service over the next 12 months. It also provides all-important detail about the government’s emerging views on reform of the health and social care system ahead of the much-anticipated 10-Year Health Plan, due to be published later this year – likely in June or July.

The findings of Lord Darzi’s investigation into the health service, commissioned and published in the weeks immediately following Labour’s general election victory, have unsurprisingly been hugely influential in shaping the development of Streeting’s inaugural mandate to NHS England. The health secretary has said the mandate will help address the urgent challenges identified by the Darzi investigation and includes a ‘sharp focus on improving efficiency and productivity.’ Streeting again warns that the ‘culture of routine overspending without consequences’ is over.

At the heart of the 2025 mandate are three key aims: reducing waiting times, improving access to primary care, and improving urgent and emergency care. To reduce waiting times, Streeting has said he is refocusing the NHS on making progress towards an 18-week standard, whereby 92% of patients wait no longer than 18 weeks from referral to treatment, which will work in tandem with the steps set out in the government’s Elective Reform Plan published earlier this year. Patient choice is also at the heart of this agenda. The mandate emphasises the importance of implementing a cultural shift in the NHS to prioritise the patient experience in reducing waiting times, including through the use of the private sector to enable greater patient control over their treatment.

Improving access to primary care is the second key aim of the mandate. This mirrors one of the three strategic shifts the health secretary wants to see as a result of his reform agenda: shifting more treatment from hospitals to communities. Streeting is clear that primary care services are the front door to the health service but for too many people it is not possible to get a timely appointment, if at all. The mandate requires NHS England to enable patients to access general practice more quickly and tackle ‘unwarranted’ variation in services provided by general practice.

Improving urgent and emergency care is the mandate’s third aim. The mandate labels ambulance response times and waiting times in A&E as ‘unacceptable’. While the health secretary recognises that transforming these services will take time, he does state that a start must be made ahead of the government publishing its strategy to improve urgent and emergency care later this year. The mandate therefore includes a specific focus on reducing long wait times to improve patient safety, experience and outcomes.

The ambitions set out by Streeting in his first mandate are laudable. The bleak fiscal situation means the health secretary will have a hawk-like focus on monitoring performance against budgets. This is in recognition that the uptick in funding that the Department of Health and Social Care received at the October budget is unlikely to point to further significant cash injections in the immediate future. For providers, it also underscores the importance of positioning themselves as a high-quality, value for money partner to ICBs and NHS Trusts in delivering strong outcomes for patients.

If you would like to discuss the 2025 NHS mandate in more detail and what it means for businesses in the sector, then please contact Hugo Tuckett (hugo@gkstrategy.com) or Arth Malani (arth@gkstrategy.com).