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Part 2: Chronic conditions, personalised care, ongoing support – but not for mental health?

20 March 2019
By Mark Brown

Accepting that you will never be fully free of things that cause you difficulties is not a defeat, especially where an understanding of how they cause difficulties is part of finding ways of living better with them. And that means resources.

Social care could provide some of the ongoing long-term care and support for people with long-term distress and mental ill-health, even if mental health is currently very far down the social care list of priorities. Health for Care, a coalition of 15 organisations convened by the NHS Confederation, issued an open letter to Prime Minister Theresa May calling on her government to properly fund social care. Without care, they argue, health gets worse for those who need ongoing support but don’t get it. 

Accepting that you will never be fully free of things that cause you difficulties is not a defeat

Broadly speaking, the NHS in England is waking up to the realisation that its job is less as an episodic treatment dispenser than it is a partner in people’s ongoing health, recognising that what keeps people well is not the same thing as what helps them when they are ill. We broadly accept that people should be able to live as long as possible with the right support and care; even if we remain politically conflicted overall about spending money raised through taxation to achieve that. Despite all that, people with long-term severe mental illnesses still on average die 15 to 20 years earlier than they might otherwise.

According to the Kings Fund about 15 million people in England have a long-term condition. Long-term conditions or chronic diseases are conditions for which there is currently no cure, and which are managed with drugs and other treatment. According to the Department for Work and Pensions, 19% of working age people in the UK (and 22% of the overall population) have a disability. Disability charity Scope claim that this amounts to 13.9 million people of a UK population of 66.02 million.

The NHS is waking up to the realisation that its job is less as an episodic treatment dispenser than it is a partner in people’s ongoing health

In October 2018 The All Party Parliamentary Group on Mental Health published “Progress of the Five Year Forward View for Mental Health: On the road to parity” observing: “Mental health treatment is most effective when the person seeking help feels involved and empowered to make decisions about their care so, where possible, service users should also have a say in the type of treatment they receive.” The chapter also quotes a carer of someone with a diagnosis of schizophrenia, explaining how far mental health feels from other forms of care: “I’ve just supported my partner through cancer care and it’s really highlighted the difference between severe physical health and severe mental health issues…the cancer pathway was clear, well-organised, and there was always someone to call no matter the time. The mental healthcare system is completely different.” 

On January 7th NHS England published The NHS Long Term Plan. It sets out the roadmap for the next ten years in the life of the NHS, and by extension, for the health of the people of England. One of its milestones is that by 2023/24, 370,000 adults and older adults with severe mental illness will have “greater choice and control over their care” and support to “live well in their communities” made possible by “new and integrated models of primary and community mental health care.” This declaration follows the final recommendations of the independent review of the Mental Health Act 1983 “Modernising the Mental Health Act: Increasing choice, reducing compulsion” in 2018, which recommended a new approach to care planning for people who have been detained under the Mental Health Act.

‘The cancer pathway was clear, well-organised, and there was always someone to call no matter the time. The mental healthcare system is completely different.’

On January 31st 2019, NHS England published ‘Universal Personalised Care: implementing the Comprehensive Model’; described as document intending to “set out our ambitions for the delivery of personalised care.” The document was drawn up in collaboration with a range of organisations; though interestingly, none from mental health.

Universal Personalised Care sets out six components of a comprehensive model for personalised care:

  1. Shared decision making
  2. Personalised care and support planning
  3. Enabling choice, including legal rights to choice
  4. Social prescribing and community-based support
  5. Supported self-management
  6. Personal health budgets and integrated personal budgets.

The document doesn’t mention long-term severe mental health difficulty, although work is underway by The National Collaborating Centre for Mental Health to explore this. Looking at the components of personalised care, they look very much like the kind of comprehensive support for which many who live with long-term severe mental health difficulties are hoping. Care; support; shared decision making; community-based supports; personal budgets: all of these are partial answers to the diversity of challenges people face and the impact they have upon people’s lives. But it’s not coming for mental health, at least not in such explicit terms.

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