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Continuing Healhcare System NOT fit for purpose! failing most vulnerable & ill in society

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Continuing Healthcare System – not fit for purpose and failing the most ill and vulnerable in society.
NHS continuing healthcare is a package of free healthcare provided outside of hospital for people who are assessed as having significant ongoing healthcare needs. It is arranged and funded by the NHS.

My own experience of obtaining funding for my terminally ill uncle is that the system fails because it is overly bureaucratic, poorly managed in terms of following Department of Health guideline for timescales to determine eligibility, and fails to keep the patient involved or informed during the process. My experience is far from unique and there are many examples on online forums and charity websites where those that are most ill have been let down.

My uncle was diagnosed with a rare form of non-Hodgkin’s Lymphoma in May 2017, but his health was already rapidly deteriorating prior to this as he had suffered a stroke and cardiac failure. Because of the complex and numerous health complications, my uncle was admitted to a nursing home, although he did not receive nursing care as it fell outside the responsibilities of the local authority.

Subsequently to his cancer diagnosis, my uncle started to suffer from gastrointestinal bleeding and was diagnosed with gastric strictures. By this stage my uncle had lost all mobility, had become doubly incontinent and needed support even to sit up or to eat by himself. His health was so poor and deteriorating rapidly, that his consultant decided he was too frail to receive treatment for the cancer as risks from side effects were now too significant. To get my uncle the healthcare support that he needed, my uncle’s social care worker applied for continuing healthcare in August.

The local Clinical Commissioning group (East Leicester and Rutland CCG) did not take any action even though they are supposed to respond within 28 days of receipt of the initial application (through what is known as a checklist). Since then, my uncle’s GP submitted a fast track application, but this was ignored, again contravening Department of Health guidelines. Instead, the CCG finally decided to proceed through their non-fast track process despite having a letter from his consultant that my uncle had in the region of six months life expectancy in early December.

The next step that the CCG took was to complete a decision support tool, a subjective assessment where the aim seemed to be to reduce the burden of NHS healthcare costs as much as possible and to get the local authority to cover costs wherever possible. My uncle is now stuck in protracted process that is a tug of war between the local authority and the CCG and cannot have his healthcare needs met through the in-house nurse at the care home despite having a terminal illness and a host of complex healthcare needs.

Whilst this never-ending assessment process goes on, my uncle has had to be rushed to hospital whenever there are health issues as the nursing home does not have the funding to cover his healthcare needs.

Whilst Jeremy Hunt’s department is now called Department of Health and Social Care, this is likely to be in name only and unlikely to lead to much needed reform to integrate health and social care (see

The National Audit Office carried out a recent study which highlight a number of worrying failures of the continuing healthcare system:
a) It is a post code lottery - eligibility rates between CCGs vary from 41% to 86% of those referred and subsequently assessed as being eligible.
b) The proportion of people assessed as eligible has fallen from 34% to 29% since 2011-12.
c) A third of applicants wait longer than the stated 28 days from referral to a decision.
What is of greater concern is that NHS England expect to make savings of £855 million on continuing healthcare by 2020-21. How this saving is to be achieved is hard to see as the aging population is growing. What is apparent is that the government urgently needs to integrate healthcare and social care, and we urge the government to bring about this reform. NHS hospitals are struggling with lack of capacity, so discharging patients to a nursing home with adequate healthcare support, where appropriate, is one way of bringing about capacity improvement. Sadly, the government has failed consistently to bring about such a reform.

Isn’t it about time that the government used joined up thinking to alleviate pressures on the NHS where possible?

Please sign this petition to urge Jeremy Hunt to start the process of integrating health and social care and to reform the continuing healthcare system so that it serves, rather than fails, the most vulnerable and ill members of society.


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