People are wrongly being denied NHS continuing care because of substantial failings in the assessment process, an inquiry by MPs and peers has found.
Service users were being assessed by professionals who lacked knowledge of their condition, did not treat them with empathy and did not understand the complex assessment process themselves, found the report by the All-Partly Parliamentary Group on Parkinson’s.
People also faced significant delays in being assessed following an application for continuing care, while some were also not given information about what they were being assessed for and how.
The report, commissioned by the charity Parkinson’s UK, said families were being caused significant distress and people faced the significant costs of funding care in full or in part through local authorities that should be funded in full by the NHS.
The charity has now launched a campaign urging the government to overhaul the system, including by ensuring that people are assessed by professionals with knowledge of their condition and receive more timely decisions.
How the assessment system should work
In England, people should have all of their social care needs and care home accommodation funded by the NHS if the “nature, intensity, complexity and unpredictability” of their needs go beyond the limits of local authority responsibilities, under the national continuing care framework.
Assessments, which are co-ordinated by the relevant clinical commissioning group, should be carried out by a multi-disciplinary team and look at the totality of a person’s health and social care needs. Then, using a “decision support tool”, professionals should rate the person’s level of need across 12 care domains, including behaviour, mobility cognition, communication, continence and emotional needs, to help determine eligibility.
The framework states that assessments should be organised so that the “individual being assessed and their representative, understand the process, and receive advice and information that will maximise their ability to participate”, and so that decision-making on eligibility is transparent.
It also says that the MDT should include health and social care professionals “who are knowledgeable about the individual’s health and social care needs”.
However, these provisions were not being followed in practice, found the inquiry, which drew on written evidence from 12 organisations and 41 individuals affected by Parkinson’s, and oral evidence from 16 professionals, service users and carers.
Professionals do not understand fluctuating conditions
In most assessments discussed during the inquiry, professionals did not understand Parkinson’s or its fluctuating nature, while organisations representing people with other conditions – such as dementia or spinal injury – said the same applied to them.
The decision-support tool was used as a “tick-box exercise” and interpreted legalistically by assessors rather than as a way of capturing a person’s needs. For example, Parkinson’s UK was told of a case in which a person on continuing care was reassessed after their condition had deteriorated to the point where they were bed-bound. But because they were deemed to be at reduced risk of falling, they received a lower score for mobility in the decision support tool, rendering them ineligible for continuing care.
The inquiry said that it was “common” for people with Parkinson’s to receive continuing care and then have it rescinded on reassessment because their condition had stabilised.
“Given the progressive nature of the condition, such a conclusion is illogical and for the individual who has then lost their funding, extremely distressing and potentially very expensive in order to maintain the same level of care – care that they still need,” said the report.
Lack of empathy and information in assessment process
Service users and carers said that professionals did not treat them with empathy during the assessment process, with some being questioned about their finances before their needs were assessed.
Also, some service users were given little information about the assessment process and how decisions on eligibility would be made, while carers were also frozen out of the process, contrary to the national framework.
The inquiry also heard concerns that decisions on continuing care were being driven by NHS finances, with commissioners seeking to limit eligibility and locked in disputes between the NHS and local authorities over who was responsible for meeting a person’s needs.
The report made a number of recommendations to NHS England, which oversees the continuing care system, including to:
- Ensure the assessment process meets the needs of people with fluctuating conditions, including by ensuring that people are assessed by people who are knowledgeable about their condition;
- More closely monitor clinical commissioning groups (CCGs) on continuing care decisions by collecting data, segmented on health condition, on applications, eligibility and how long people have been receiving continuing care;
- Provide CCGs with clearer guidance on continuing care assessments, including timescales for completing each stage of it;
- Ensure people with a progressive condition are not continually reassessed for eligibility.