The Darzi report: what does it mean for people with a learning disability?

The government has announced the ‘biggest NHS reform in history’ after an independent investigation by Lord Darzi  into the health service found that thousands of patients are left dying due to delays, poorly allocated resources, overwhelmed A&E departments, and widespread staff shortages.

The Independent investigation of NHS performance in England was commissioned by the Secretary of State for Health and Social Care in July and sought to examine patient access to healthcare, the quality of healthcare being provided and the overall performance of the health system.

The conclusions were damning and found that the NHS is currently in a critical condition and has been chronically weakened by a lack of capital investment which has lagged other similar countries by tens of billions of pounds.

Sadly, the findings will be of no surprise to professionals working with people with a learning disability and autistic people. Especially as it highlights what has long been known – the challenges around quality of care have not been felt equally.

The Darzi report says there are severe disparities in learning disabilities

In his letter to the Secretary of State, Lord Darzi said his attention had been drawn to some worrying health inequalities that will require further examination than has been possible in the time available, but he wanted to highlight some particular areas of concern.

These included important and severe variations in care for people with a learning disability. The report went on to cite the depressing statistics that most of us could now rattle off in our sleep:

• Only four-in-10 people with a learning disability will live to see their 65th birthday.
• People with a learning disability are twice as likely to die from preventable causes and four times as likely to die from treatable causes—with areas such as respiratory care and cancer care of particular concern.
• There are multiple barriers that prevent people with learning disabilities from accessing the care that they need.
• Around three-quarters of people with a learning disability are not on the GP learning disability register.

It also made reference to the 2,000 people with severe learning disabilities and/or autism who continue to be detained in inpatient mental health settings, adding that: “the 2024-25 NHS Planning Guidance re-states the target to reduce inpatient numbers by 50 per cent, but this is in the context of failure to meet 2014, 2019, 2020 and 2024 targets.” Current estimates suggest that it may not be achieved until 2030 or even later.

Carers need more support from the NHS

The 4.7 million unpaid carers in England were also recognised in the report. This includes 1.4 million of whom that provide more than 50 hours of care each week. It said that many carers struggle with their own health and one-third of all NHS staff are carers themselves. It added that they do not receive the recognition and support that they need and deserve from the NHS. Instead, they feel invisible, misunderstood and unsupported despite their huge contribution.

It suggested that a fresh approach is needed which regards unpaid carers both as people with their own needs where caring is a significant factor in their lives, but also as a provider of care who should be treated as an equal partner.

What next?

The report concluded that although the NHS is in critical condition, its vital signs are strong and the Prime Minster Sir Keir Starmer has now promised to draw up a new 10-year plan for the health service. The report will be published in the Spring and will set out three key areas for reform – the transition to a digital NHS, moving more care from hospitals to communities, and focusing efforts on prevention over sickness.

Although social care was placed outside Lord Darzi’s remit, Starmer did confirm in a speech at the King’s Fund that adult social care sector will feature in the government’s upcoming 10-year health plan.

He added that the biggest improvements to health and care will come from prioritising services outside of hospital. That means greater investment in the primary and community services that support people before they end up needing hospital treatment.

There also needs to be political focus on public health strategies that keep people healthy and prevent illness in the first place.

Response to the Darzi report

The report has been widely welcomed by health organisations and charities who have said that the government is right to call the needed reform ‘radical’.  Without radical action, the NHS won’t survive. As pointed out by Lord Darzi, ‘we cannot afford not to have the NHS’.

Mencap said that Lord Darzi’s findings acknowledge that the social care system is in absolute crisis – affecting not only the millions of people who rely on social care, but placing an unacceptable burden on our NHS.

Jon Sparkes OBE, Chief Executive, said: “We hope the Government treats this as a priority. Without tackling the crisis in social care we cannot tackle the entirety of the issues facing the NHS.

“People with a learning disability have faced multiple barriers to treatment and the healthcare system consistently not meeting their needs. The findings from this review must be looked at urgently and the healthcare system improved to provide high quality care and end the scandal of people with a learning disability dying avoidably decades younger.

“This should include significantly increasing the numbers of people with a learning disability on the GP learning disability register, increasing the number of specialist learning disability nurses and funding a successful rollout of the Oliver McGowan Mandatory Training in Learning Disability across health and social care.”

The National Autistic Society added that this report paints a picture of an NHS on its knees. It rightly says overwhelmed autism diagnosis services mean people are going without the support they need.

Tim Nicholls, Assistant Director of Policy, Research and Strategy said: “We’ve been saying this for years. There is only one option – create and fund the services people need. Funding for both healthcare and social care needs to move to the right places to make an NHS fit for the future. If it’s going to be fit for autistic people, this must include diagnosis and support for autistic people. Without this, they will continue to face health inequalities and battles to get a diagnosis and help when they need it.”

Jim Kane, Chief Executive Officer at Community Integrated Care, also welcomed the ‘comprehensive but alarming report’ and said that although outside the scope of his review, they also support Lord Darzi’s view that ‘it is impossible to understand what has been happening in the NHS without understanding what has happened to social care’ which he rightly describes as not being valued or resourced sufficiently, and which has both a profound human cost and economic consequence.

He added: “We look forward to seeing Lord Darzi’s analysis leading to strong action by the Government through the development of a new Ten-Year NHS Plan to improve the health, care and support of people with learning disabilities to enable them to live their best possible heathy, fulfilling and independent lives.

“In particular, the NHS and social care systems must provide properly integrated care and support at key points when the two systems are dependent upon each other for ensuring better care of people with learning disabilities. These include better delivery of integrated health and care services in the community, reduced avoidable admissions into hospital and reduced delayed discharges from hospital into community settings.”

As always, the devil will be in the detail, but it is clear that social care must be front and centre of the plans along with listening more to patients and addressing the ever-growing staff shortage crisis. Only then will people with a learning disability and autistic people get the healthcare they deserve.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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