Written evidence from Continuing Healthcare Alliance

 

The Continuing Healthcare Alliance

  1. The Continuing Healthcare Alliance (CHA) is a coalition of 16 charities and organisations who are campaigning to improve NHS continuing healthcare (NHS CHC).

 

  1. CHA members include: Parkinson's UK, MS Society, Multiple System Atrophy Trust, Motor Neurone Disease Association, Age UK, Beacon, Sue Ryder, Carers Trust, Marie Curie, Dementia UK, Spinal Injuries Association, Stroke Association, Alzheimer's Society, PSP Association (Progressive Supranuclear Palsy – CBD), Patients Association, Learning Disability England

 

  1. In 2013 the All-Party Parliamentary Group (APPG) on Parkinson’s conducted an inquiry analysing the state of NHS CHC in England and produced the Failing to Care[1] report. They heard evidence from people affected, professionals in the system, and patient organisations. Following the inquiry, many of the organisations who gave evidence joined together to form the Continuing Healthcare Alliance.

 

  1. There have been a number of improvements as a result of this work. NHS England acknowledged there was a need for independent advocacy. They now fund an information and advice service that supports people through the NHS CHC process, called Beacon. The NHS pays for people to access 90 minutes of free advice through this service. Other improvements include better data collection, and training recognition.

 

Introduction

  1. The CHA is delighted to have the opportunity to provide evidence to the Public Accounts Committee inquiry into NHS CHC. If the Committee would find it useful to gain a broader picture of the experiences of patients and their carers, healthcare professionals and patient organisations we would highly recommend holding a public consultation with ample time for submissions. The CHA remains confident that significant improvements can be achieved by giving those accessing the system the opportunity to feedback their experiences.

 

  1. Despite making positive progress in some areas; the CHA remains gravely concerned that the NHS CHC system is a long way from where it should be. We know through our work locally that people accessing the system are suffering. We believe that it urgently needs a radical overhaul to make it accessible for those that need it, the most vulnerable, disabled and sick in society and their carers.

 

Executive summary

  1. The key issues outlined in this response are:
    1. £855 million spending cuts to care: The CHA are seriously concerned by reports that NHS England wants Clinical Commissioning Groups (CCGs) to make £855 million of savings on CHC and NHS-funded nursing care by 2020- 21 on its prediction of growth.[2]  At a time when demand for this service is growing we should be having a sensible conversation about how we invest in this service, not making further cuts which will devastate some of the most vulnerable patients, carers and their families.

 

    1. Commissioning: Cost-capping, top-ups and regional variation: The Alliance are increasingly concerned by the growing number of CCGs adopting policies that set a cap on what they will pay for people who are eligible for NHS CHC above the cheapest available care home option. These limits fall short of the cost of providing ongoing care in a person’s home, which means that people are often forced into residential care regardless of whether it is the most appropriate place for them.

 

    1. The assessment process: People who should be found eligible are denied CHC. Despite national guidance stating that condition specialists should be included, our research found that 66% of survey respondents felt the professionals in the assessment knew very little about the condition of the person they were evaluating. Furthermore, people are facing outrageous delays. Whilst the timeframe is set at 28 days, the CHA is aware of people waiting up to three years; and sadly in some cases people die before they hear their decision. Meanwhile, the CHA is concerned that reassessments are causing more distress while unnecessarily draining NHS resources where people have degenerative conditions.

 

    1. Awareness and communication: ‘The best kept secret in the NHS’: The NHS CHC system should be there to support some of the most severely unwell, disabled and vulnerable people in society and their carers. It is therefore paramount that the system is easy to navigate. Unfortunately the system couldn’t be further from this in reality- it is notorious for being overly bureaucratic and insensitive in how it communicates with people applying. We have even heard it described as ‘the best kept secret in the NHS’. Our research found that 60% of survey respondents didn’t know about the existence of NHS CHC until very late in their journey through the health and social care system, and even then they discovered it by chance. 78% of professionals believed the system is difficult for patients and their families to navigate.

 

Spending cuts

  1. In July the National Audit Office published their report that stated NHS England wants CCGs to make £855 million of savings on CHC and NHS-funded nursing care by 2020-21 on its prediction of growth.[3]

 

  1. This would be achieved by reducing both administrative assessment costs and the overall cost of care through reducing variation in spending, and ensure that CCGs interpret the eligibility criteria more consistently.[4]

 

  1. However given that the total spend on administrative assessment costs amounted to £149 million in 2015-16[5]; the CHA remain gravely concerned about the impact that cuts to the cost of care will have on patients, carers and their families.

 

  1. Having met with NHS CHC Directors, the CHA remain unclear about how these cuts will be made and what modelling has been done to demonstrate that it is deliverable.

 

  1. At a time when the Government needs to be investing in a system which desperately needs a radical overhaul, the CHA are gravely concerned that the planned spending cuts will have a devastating impact on some of the most vulnerable sick and disabled people and their carers.

 

  1. Recommendations: We call on NHS Directors to outline comprehensive plans to make these budget cuts and urge the Government to rethink the scale of them. At a time when the system is at breaking point we need to have a sensible conversation about how it can better support severely sick, disabled and vulnerable people and their carers.

 

 

Commissioning: Cost-capping, top-ups and regional variation

  1. The Alliance are increasingly concerned by the growing number of CCGs adopting policies that set a cap on what they will pay for people who are eligible for NHS CHC above the cheapest available care home option.

 

  1. This means that people are being told that if the cost of receiving their package of care at home exceeds the cost of a place at a care home then they may have to go into residential care. People are being put into the impossible position of having to choose between accepting unsafe levels of care in order to stay at home and effectively ‘topping up’ their care package by making up the difference or they face being forced into residential care whether or not it is the most appropriate care setting.

 

  1. For instance, Simca is 53 and paralysed from the neck down after developing an epidural abscess on holiday. He has qualified for full NHS CHC funding. He wants to live at home with his wife Dina and their 4 children. However, his CCG have said that they will pay for 105 hours of care per week regardless of the fact that his assessed needs are for 168 hours. Despite being ready for discharge since Easter, Simca remains in hospital. His wife Dina noted:  “I thought all my worries are over. We’ll get Simca home, the financial burden will be covered and we’ll be able to get on with our life as best we can in the circumstances that we’re in…. on a weekly basis my children are asking when he is coming home but I don’t have an answer to that and they have stopped asking because I just don’t have an answer for them.” Simca: “My children need me, I’ve been a father who is extremely involved with my children all my life, the children need their daddy”[6]

 

  1. It is also important to note that according to the National Framework; ‘topping- up’ is not permissible under NHS legislation.[7]

 

  1. The Equality and Human Rights Commission wrote to 44 CCGs on 24 October 2017 to call for more information on how these policies were developed.[8] They warn that these policies could be discriminatory on the grounds that they are depriving people from their right to a family life. The Commission argue that it is unlawful for any CCG to impose a hard cap. They must always assess a person based on their individual needs.

 

Leicestershire settings of care policies

  1. Members of the CHA have been actively campaigning in Leicestershire, where plans were announced in early 2017 to cut £29 million from the NHS CHC budget in Leicester, Leicestershire and Rutland[9]. That amounts to 40% of the £73.5million spend on CHC funding in 2015-16.[10] This is an enormous cut which will have a devastating impact on patients, carers and their families.

 

  1. The 3 CCGs in the area have been working to introduce Settings of Care policies which would include a 10% cap above the cheapest available care option. In response to our concerns, Leicester City and West Leicestershire have agreed to delay implementation while they undertake further equality impact assessments and review the situation in early 2018. However, East Leicestershire and Rutland CCG have begun implementing the policy. The Alliance have been particularly alarmed by the process in which this policy is being implemented and is concerned that East Leicestershire and Rutland CCG are not giving due consideration to public engagement processes.

 

  1. Recommendations: The CHA is calling for CCGs to consider applications for NHS CHC on a case by case basis, carefully considering the needs of the individual. While we recognise that the NHS is under pressure, it is unacceptable that the most severely sick, disabled and vulnerable people and their carers are expected to bear the brunt of these devastating cuts. This system should be there to support people through what are already extremely difficult circumstances.

 

The assessment process

  1. The assessment process is a shambles. People who should be found eligible are denied CHC and reassessments are causing distress. In many cases the CHA believes that this is an unnecessary drain on NHS resources. The alliance is also aware that the appeals process can be time consuming, complex and distressing.

 

  1. In 2015-16 around a third of assessments took longer than 28 days.[11]

 

  1. Despite national guidance stating that condition specialists should be included, 66% of survey respondents felt the professionals in the assessment knew very little about the condition of the person they were evaluating.[12]

 

  1. We know that assessments take place where members of the multidisciplinary team (MDT) have never met the individual before.[13]

 

  1. 80% or professionals surveyed said that the decision-support-tool (DST) was not fit for purpose, or there was room for improvement in some areas. [14]

 

 

  1. The CHA are aware of people who have waited up to three years to hear whether they are eligible for NHS CHC. Sadly, in some cases people have died before receiving a decision.[15]

 

  1. Most local areas insist on reassessing people at least annually. Our Freedom of Information request found that between April 2015 and March 2016 one CCG withdrew funding from 241 people following a reassessment. There are occasions where withdrawing NHS CHC can be justified (if a person’s health needs have reduced). However many people being reassessed are in the advanced stage of their condition- which in many cases is degenerative, and often near the end of their life. As well as being an incredibly anxious time for the person being reassessed, and those close to them, we also believe that reassessments are an unnecessary use of NHS resources.

 

  1. The alliance is aware that many decide not to appeal their NHS CHC decision. This is not because they feel the decision was correct, but because they are too distressed and exhausted to go through the complex appeals process.

 

  1. For instance Sue from Gloucestershire cared for her husband Bob who had an aggressive form of Parkinson’s. Within six years of diagnosis Bob went from being independent to needing a wheelchair, hallucinating, having short-term memory loss, being awake all night and having bowel collapse. They hadn’t heard of NHS CHC until their Parkinson’s nurse suggested they apply. For months Sue contacted the CCG but was passed from pillar to post.  Bob had to move to a nursing home, and passed away aged 70. The day after his death the CHC assessor knocked on the door to conduct the assessment. Sue was told that a retrospective assessment would be conducted.[16]

 

“Seven months later I received a 64-page document with a covering letter asking me to read through the information and provide a comment. I didn’t really understand what I was reading, but having to focus on Bob’s condition was painful and I got weepy. When I finally got to the end, on the final page it said their decision had already been made, and they were rejecting our application. I couldn’t believe it! The whole process was dreadful; it was as if they forgot they were dealing with real people.”[17]

 

  1. Recommendations:
    1. We recommend that the Government urgently address regional variation in assessment outcomes across England. The Checklist and DST need to be rewritten so they more effectively measure individuals’ healthcare needs against the lawful limit of care that the local authority can provide.
    2. The assessment tools must be accompanied by clear guidance in order to ensure consistency across regions.
    3. Until the assessment tools are rewritten, MDTs must use the key indicators and their professional judgement when deciding on an individual’s eligibility for NHS CHC.
    4. CCGs and local authorities need to ensure that all staff who deal with NHS CHC have thorough training to understand the lawful limit of care that the local authority can provide regarding healthcare.
    5. CCGs must involve professionals with condition-specific expertise- preferable in person, or where this isn’t possible by requesting evidence and advice in advance.
    6. Whilst some CCGs successfully guide people through the process, others must urgently overhaul their processes to make them user friendly and transparent. CCGs must ensure that they have a person centred approach.

 

Awareness and communication: ‘The best kept secret in the NHS’:

  1. People enter the health and social care system when they are at their most vulnerable. With NHS CHC marking the boundary between health and social care, all too often people slip into a void where no one gives them the advice they need. It is therefore critical to have a system in place that can support people through this difficult time and signpost them efficiently through the process. In reality NHS CHC is notorious for complexity, being overly bureaucratic, poor customer care and insensitive communication. We have even heard it described as ‘the best kept secret in the NHS’. Through our research the CHA identified some key areas for concern:

 

  1. 60% of people in our survey said they did not know about the existence of NHS CHC until very late in their journey through the health and social care system. When they did find out, it was usually by chance, or being told by a friend.[18]

 

  1. Signposting to NHS CHC should come from health and social care professionals but worryingly in our survey only 3% of respondents told us they found out about NHS CHC from their GP. 5% were told by their clinician, 15% were informed by a hospital doctor or nurse, and 11% found out through their social worker.

 

  1. The system is notoriously complex and intimidating to navigate for those who need NHS CHC. 54% of survey respondents said they were not provided with enough information or advocacy.

 

  1. 78% of health professionals surveyed believed the system is difficult for patients and their families to navigate.

 

  1. For instance Jane’s mother was diagnosed with motor neurone disease (MND) in October 2015 at the age of 72. After four months she had rapidly deteriorated and went to a hospice after collapsing and having a feeding tube fitted, they were told by the doctor that she had ‘no more than six months’ to live. They hadn’t heard of NHS CHC until an Occupational Therapist told them about it. They contacted the CCG to start the process and were advised that they would be assessed a few weeks later- however it was not explained that this was only the checklist stage and that if Jane’s mum qualified for full assessment this would take another six weeks. After doing their own research they became aware of fast-tracking. However when Jane contacted the GP he insisted that it wasn’t his role. When Jane contacted the MND consultant he replied that it was for the GP or nursing home:

 

“Mum died in May still waiting for her full assessment. To say I feel let down is a complete understatement…the process is so protracted that I’m not sure who actually gets this support. There needs to be more transparency and greater clarity on what should be funded. My mum deserved much better than this.”

 

  1. Recommendations:
    1. From start to finish, NHS England and CCGs must ensure that there is a clear process for health and social care professionals to proactively signpost individuals to NHS CHC, as well as promoting experienced, independent advocacy and support at every stage.
    2. NHS England must provide information about the system publically- including the checklist, Decision Support Tool criteria and details on fast track assessments- through their communication channels and partners.

 

Conclusion

  1. The CHA encourage the Public Accounts Committee to call on the Government to rethink implementing planned spending cuts to NHS CHC. At a time when the system is at breaking point we need to have a sensible conversation about how it can better support severely sick, disabled and vulnerable people and their carers.

 

  1. We recommend that the Government urgently address regional variation in assessment outcomes across England. NHS CHC assessment tools must be rewritten and accompanied by clear guidance ensuring that people who are eligible for NHS CHC are identified and supported through the process and receive it in good time. Whilst some CCGs successfully guide people through the process, others must urgently overhaul their approach to ensure that their processes are person centred; and rethink cost capping- which has a devastating impact on patients, carers and their families.

 

  1. The CHA believe that much could be done to improve people’s experience of the NHS CHC process from start to finish. The Government, CCGs and Local Authorities all need to do more to signpost people to NHS CHC and guide them through the process, ensuring that they receive the assessed care package that they need in an appropriate timeframe.

 

October 2017

 

For more information please contact:

 

Matina Loizou

Chair of the Continuing Healthcare Alliance

C/o Parkinson’s UK

251 Vauxhall Bridge Road

London

SW1V 1EJ

continuinghealthcarealliance@gmail.com

 

 

 

 

 

 

1

 

[1] All-Party Parliamentary Group on Parkinson’s, Failing to Care, 2013

[2] The National Audit Office, Investigation into NHS Continuing Healthcare, July 2017, p.5

[3]Ibid, p.5

[4]Ibid

[5]Ibid, p.10 

[6] BBC Radio 4 You and Yours, Expensive Care Options, 25/10/2017

[7] Department of Health, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, 28/11/2012, p.118

[8] The Independent, NHS cost cutting leaving disabled people 'interned' in care homes,  25/10/2017

[9] Leicester, Leicestershire and Rutland CCGs, Draft STP, 11/2016

[10] East Leicestershire& Rutland CCG, Continuing Healthcare: Settings of Care Policy, 2017

[11] The National Audit Office, Investigation into NHS Continuing Healthcare, July 2017, p.9

[12] The Continuing Healthcare Alliance, Continuing to Care, 2016, p.4

[13] Ibid

[14] Ibid

[15] The Continuing Healthcare Alliance, Continuing to Care, 2016,p.5

[16] Ibid, p.7

[17] Ibid

[18] Ibid, p.6