Failing to Care – NHS Continuing Care in England

Failing to Care is a recent report undertaken by the All Party Parliamentary Group on Parkinsons chaired by Baroness Gale and commissioned by Parkinsons UK – which was published in November 2013.

The report is highly critical of the way the NHS handles Assessments for NHS Continuing Healthcare Funding (although the report is focussed on patients with Parkinsons disease, we see all the same issues associated with most other diseases and conditions, particularly affecting the elderly)

We’ve highlighted some of the key issues from the report and our response to those issues.

We think the report can be summed up by the following quote from one of its contributors:

“The process is intimidating, humiliating , unfriendly, exhausting, degrading, aggressive, frustrating and also it is adversarial. These are terms that I have written down that patients, relatives and even CHC assessors have used themselves.”

 Karen Guy, Parkinson’s Disease Nurse Specialist

 And by the Health Service Ombudsman’s statement:

 “Only a minority of people are successful in claiming NHS funding for their continuing care needs … it is clear that most people’s care needs are not being met by NHS continuing care funding.”

 Parliamentary and Health Service Ombudsman

Farley Dwek has long recognised that thousands of vulnerable people are being unfairly treated by the NHS in terms of their eligibility for Funding and this year we have launched a unique Advisory Service to provide support to clients who have been unfairly treated – to guide them through the complicated Assessment process using our specialist legal expertise and team of highly skilled nurses.

Executive Summary Highlights include:

  • “Due to a lengthy process, people with Parkinson’s are dying whilst waiting for their health board to make a decision on whether they are eligible.”
  • We understand the Assessment Process and the NHS Guidelines and can help to secure a quicker Assessment
  • “59 per cent of assessments did not involve a professional with specialist expertise or knowledge in the condition – leading to inaccurate and incorrect decisions on funding”
  • Our team of specialist nurses have all worked within the NHS in the area of NHS Continuing Healthcare Funding for many years. They know the system inside out and their clinical expertise has so far secured Funding in over 90% of cases where we have attended an Assessment to support a patient.
  • “All of the health and social care professionals we spoke to admitted the system is so complex they have difficulty following the correct process”
  • Our specialist nurses all understand the process – it’s not complex to them.
  • “40 per cent of people going through the assessment process reported experiencing a lack of empathy and transparency from professionals, in the decision making process and in appealing against a decision”
  • Sadly this is the experience of most of our clients too. With our specialist team acting as advocates for our clients, we can ensure that the process is as straight forward as possible. Once we’ve carried out our initial assessment, if we believe that a client should be eligible for Funding we will represent them throughout the Assessment process, including being present at the critical Checklist and Full Assessment meetings.
  • “24 per cent of people with Parkinson’s were continually reassessed, despite living with a progressive condition”
  • Once we are engaged to represent our clients, we will also be there at any reassessment meetings.
  • “In 21 per cent of cases examined, there were clear examples of existing national guidance not being followed either in the length of assessment or in how the decision is made, with no repercussions for breaching these guidelines”
  • This is where our specialist advice is key. We know how the process should work and how to put pressure on the NHS to comply.
  • “A lack of local NHS’ performance data meant that the Department of Health is unable to tell if and where issues are occurring. The lack of monitoring and enforcement also means that they are not taking action to resolve them”
  • Once again, sadly this is also our experience, but understanding the complexities of the system and having specialist legal representation does help. Remember, there are very few law firms who specialise in NHS Continuing Healthcare Funding. Farley Dwek were one of the first firms to get involved in resolving Funding issues and we’ve helped hundreds of clients over the last 3-4 years.

Some of the recommendations in the Report include:

  • “End uncertainty for those involved in assessments by establishing an improved national framework with clear processes, guidance and timelines for decision making. These should be applied by Clinical Commissioning Groups who are held to account by NHS England for their performance”
  • “Implement an assessment process that reflects the needs of people with complex and fluctuating conditions, including assessments that involve healthcare professionals with expertise in that condition”
  • “Ensure sick and vulnerable people are able to navigate the difficult assessment process by giving them the right to experienced, independent support for everyone applying for NHS continuing care”
  • We wholeheartedly support these recommendations and are working with our PR Department to ensure that these issues receive the widest publicity in the national media.

Some other helpful extracts from the report by way of background to the issues include:

  • NHS continuing care is defined as ‘free care outside of hospital that is arranged and funded by the NHS It can also be referred to as NHS Continuing Healthcare or fully funded NHS care.
  • NHS continuing care can be provided in any setting, including a care home, hospice or the home of the patient. If someone living in a care home is deemed eligible for NHS continuing care, it will cover all of their care home fees, including the cost of accommodation, personal care and healthcare costs.
  • If NHS continuing care is provided in the patient’s home, it will cover personal care and healthcare costs. To be eligible for NHS continuing care, the patient must be assessed as having what is deemed a ‘primary health need and have a complex medical as well as and substantial and ongoing care needs.
  • Due to the nature of Parkinson’s, people with the condition who are eligible for NHS continuing care are often not in a position to make the application independently. It is often made by their families on their behalf.
  • The process these families go through to obtain NHS continuing care for their relatives tends to be complicated and stressful for all concerned. Parkinson’s UK believes that it is vital that patients eligible for NHS continuing care should be able to claim the funding as and when they need it. The charity believes that it is “unacceptable that many people have to fight for the NHS to fulfil its obligations to provide free continuing care”3 and has called on all UK governments to ensure there is fair and consistent access to NHS continuing care.
  • We agree that the NHS Continuing Healthcare Funding Assessment process needs to be overhauled. Until it is however, we are able to assist clients through the current Assessment process by providing our Advisory Service.
  • In addition we offer FREE GUIDES which offer advice about how to navigate through the complicated Funding process.

The Report highlights issues which arise as a result of a lack of knowledge and understanding of the process, including:

  • From the submissions we received from individuals, the vast majority of them had never heard of NHS continuing care before they first encountered it. As it appears that it is not a particularly well-publicised, it is not something that occurs to individuals and their families to pursue.
  • Many of the submissions we received referred to finding out about the possibility of applying for NHS continuing care by chance, due to a conversation with a member of hospital staff or social worker. This was particularly relevant when it came to the assessment process for the individuals and their families. The Spinal Injuries Association felt that this lack of knowledge severely disadvantaged individuals and their families:

“People are assessed and they are not told in detail what they are going to be assessed against and what they have to do to qualify for continuing health care. So, essentially, you are going through an assessment process without understanding the process and without understanding the pass mark”

  • Specifically, there seemed to be the belief that individuals were only eligible if they were extremely ill or at the end of their lives. Several people recollected being told that in order to be awarded NHS continuing care, the individual had to be ‘practically dead’. Although there is a ‘fast-track’ option for individuals in an end-of life phase, NHS continuing care can be awarded to anyone whose needs are deemed eligible.
  • We hear this all the time from our clients who tell us that they have not been informed about their potential eligibility for Funding, which is why we are constantly working with our PR Department to bring this issue to the attention of the main stream media.

The report also highlights how difficult people find the process:

  • The other issue that occurs with NHS continuing care is the difficulty experienced in understanding and navigating the process. Even health professionals said that they found the process to be extremely complex and many of the individuals who contacted the Inquiry described how complicated and confusing they found the process throughout their entire experience of NHS continuing care. The lack of information makes it very difficult for people to make progress towards claiming NHS continuing care.
  • Many submissions, both from individuals and from organisations, described situations where families felt they had been excluded from the assessment process – despite the fact that the assessment is supposed to be ‘person-centred’ and involve families and carers.
  • This made it difficult for carers to get the information they wanted to support their relatives and ensure that they were getting the care they were entitled to. It was noted that there is often little support for the families, such as an advocacy service. Although Julie Hill did have an advocate for part of her case with NHS continuing care, she felt that a more widespread service would be of use because:

Very few people actually see an advocate. She did help me quite a lot.

At the very end, even the advocate was intimidated by the PCT and she did not actually come to that final assessment because of intimidation, which I thought was appalling”

  • From the individuals who gave evidence to the Inquiry, the complexity of the NHS continuing care process was clearly extremely daunting.

Many people talked about having to become overnight ‘experts’ in a complicated legal process, to support their or their relative’s application. Those that got involved in their relative’s application often felt that their relatives were in a fortunate position to have someone able to take this on for them and worried for those on their own without someone able to take the process on. It was suggested that the use of advocates might help people to navigate the process.

  • The NHS Framework does provide for patients to be supported through the process by an advocate. Often the patients advocate will be a relative or friend, and as the report highlights, this can place stress on the person acting as an advocate in an unfamiliar environment. As solicitors we can also act as a patient’s advocate, including our team of specialist nurses. Although the NHS suggests that solicitors aren’t necessary, the Report highlights the useful role of solicitors as advocates and our Client Case Studies highlight how successful we can be in this role.
  • Of course we do understand that clients can act for themselves through the process, which is why we’ve produced our FREE GUIDES to help people understand exactly how the process works and how to engage with the NHS.

The Report also highlights the issue of Costs Shunting and why that could be one of the reasons that Funding is so difficult to obtain:

  • The issue of costs being ‘shunted’ between health and social care was regularly highlighted in the submissions to this inquiry. As healthcare is free at the point of need and social care is currently paid by the user on a means-tested basis, there are significant implications for who is considered responsible for providing an individual’s care.
  • It was noted in the evidence received that the number of people receiving NHS continuing care is decreasing. This seems counterintuitive, given the UK’s ageing population and increasing complex health needs. Evidence was provided of where certain PCTs had reduced their number of patients receiving NHS continuing care to a quarter of that level in approximately two years
  • When people are deemed ineligible for NHS continuing care, responsibility for their care is transferred to local authorities. This care is then considered part of the social care system. This is means-tested and the individual is expected to contribute a certain level of funding until their assets fall below a certain amount. This can result in people who thought they were eligible for NHS continuing care being asked to pay large sums towards their care. Some estimated that they have spent thousands supporting their relative while trying to arrange for NHS continuing care. As all assets are taken into account, (including property where the person has moved into residential care), others told the Inquiry they were informed that they would need to sell their relative’s house to continue paying for their care.
  • A common theme was the lack of focus on the individual’s needs when undergoing the assessment process. Many people had unpleasant experiences throughout the assessment processes. This often started with the individuals and their families being asked about their current financial situation and how much they had in the way of assets. As the Royal College of Nursing noted:

“This is the wrong way round and the NHS should always carry out its assessment first, to ensure a patient’s health needs are appropriately cared for “

  • We see clients who have unfairly paid for their care all the time. Although it is grossly unfair, you can reclaim wrongly paid care home fees back from the NHS. The process takes time and involves a retrospective clinical examination of a patient’s condition over time. However, we have successful recovered fees on behalf of hundreds of families and the average recovered is a staggering £60,000 per claim.
  • Of course not everyone will qualify for NHS Continuing Healthcare Funding and it’s important to seek Independent Financial Advice to help with planning for current and future fees, which we can also help with.
  • Finally, although the report deals with the deplorable current state of Assessments within the NHS, it does highlight the need for future care planning. Whilst we hope the recommendations of the Report are met and many more people qualify for Funding through an improved and more transparent service, those who may have a future requirement for care should seek advice on how best to protect their assets from those future costs. Advice about asset protection can be found on our website.

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