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On Wednesday 1 November, the House of Commons’ Public Accounts Committee met to hear evidence on NHS Continuing Healthcare (CHC). This followed the publication of an investigation by the National Audit Office in July 2017, which echoed the Continuing Healthcare Alliance in raising significant concerns about the system.
Beacon’s Managing Director, Dan Harbour, was invited to join a panel of witnesses to give expert evidence to the Committee.
The other members of the first panel represented the Spinal Injuries Association, Continuing Healthcare Alliance and Sue Ryder Hospices. Their evidence catalogued a number of key issues with the current system that are letting vulnerable people and their families down.
The major issues brought by the panel were:
- Poor assessment tools
- Inconsistent decision-making
- Uninformed decision-making
- Distressing and dangerous delays
- Capping of funds
- Poor public awareness
- Excessive and alienating complexity
The Decision Support Tool
It was felt that the national guidelines for NHS CHC are, by and large, adequate. However, the tools that are used during the assessment processes are not fit for purpose. In particular, the Decision Support Tool – the complex form that is completed during a full assessment of eligibility for CHC – is so open to interpretation that it creates vast variation in eligibility decisions. Clinical Commissioning Groups (CCGs) frequently contradict each other in their approach.
The Multidisciplinary Team
A second problem with assessments is in the variable standards of the professional teams brought together to make decisions about individual’s needs. There are pockets of good practice, but in many areas of the country, CCGs field the smallest team permitted. This tends to be a nurse and a social worker, sometimes who have no experience of that individual or specialist knowledge of their condition. This totally goes against the sentiment and best practice of a ‘multidisciplinary team’ as stated in the National Framework.
This variability in standards is mirrored in Fast Track assessment of those at the end of life. In some places people get funding quickly and are often able to die in the place of their choosing. Elsewhere the situation is much worse and very distressing.
Delays in assessment
Delays in assessment are frequent. A process from referral to assessment should take 28 days, but can be strung out over months or years. In the interim, very poorly people have to rely on informal care from their loved ones. In palliative care, it can mean people aren’t able die in the place of their choosing, which causes enormous distress for the surviving families.
Capping of care
Rationing, or capping, of the CHC budgets is a major concern, and a policy that appears to be spreading across the country. People are being limited to cheaper packages of care, which tend to be in nursing homes rather than in their own homes. This is unacceptable and inappropriate for many people – for example younger adults with spinal injury – who want to be with their families and contribute to their community and the economy.
Awareness and accessibility
Finally, the panel spoke of the poor communication of CHC. There is poor public awareness that the system exists at all, meaning that many people – and often those in the least affluent sections of society – are missing out even on the chance to be assessed for eligibility.
Once in the system, it can be utterly alienating, with families and carers sometimes excluded from the process. There can be a feeling of ‘David and Goliath’, where vulnerable individuals are – particularly if appealing a decision – alone in battling a resource-rich organisation and a complex system with the odds stacked against them. It is enough to defeat even the most resilient individuals.
Recommendations
To conclude, the Chair of the Committee asked each member to say the two or three things that would make the most difference to individuals navigating this system:
Dan Harbour, from Beacon, said that implementation, training and quality control for assessments is key to solving the massive variations in the system. We need to get into the mindset of changing the culture to unpick ingrained poor practice in assessment techniques.
Elise Hoadley, from Sue Ryder Hospices, said that assessments need to be more robust and accountable. Assessors need more training and professions need to work together.
Matina Loizou, from the Continuing Healthcare Alliance, said it’s time to get serious about how we fund this. The assessment tools need a radical overhaul. And the system needs to be more user-friendly and transparent.
Brian O’Shea, from Spinal Injuries Association, added that professional specialists must be given due regard and involvement in the process. Don’t leave these decisions to generalists. The system must be simplified and continued reassessment must be stopped for people with non-improving conditions. It’s a waste of money for the system and stressful for the individual.
The response panel
The second panel to be questioned by the Committee was made up of representatives of the Department of Health (DoH) and the NHS.
The panel consisted of:
- Jane Cummings, Chief Nursing Officer, NHS England
- Jonathan Marron, Director General Community Care
- Simon Stevens, Chief Executive of the NHS
- Sir Chris Wormald, Permanent Secretary
The panel recognised a picture of complication and variation in the system, around which the DoH want to see progress. It was said to be a key priority, and the subject of a two-year strategic improvement programme that began in April 2017.
The complicated guidance that health professionals have to put into practice means it’s not surprising there is variation. It is difficult to spread best practice between CCGs across the country, but efforts are underway to learn from those CCGs getting aspects of the system right.
There have also been efforts to make the analysis of CHC more complete, by making it mandatory and incentivised for CCGs to collect and provide more and quality data in this area.
When questioned about the low proportion of people found eligible after full assessment the panel noted that they don’t want people to slip through the net by being refused an assessment, but that this can raise false hope for families. It is a tricky balance. It was noted that the number of full assessment has fallen, perhaps partly because professionals are getting better at identifying those that are unlikely to be eligible, and are ruling them out of the assessment process. And work is continuing on training of assessors.
The panel said they are looking to narrow the variation in spend on CHC across CCGs, as well as achieve £855 million in efficiency savings in the coming years. The panel noted that this figure is the amount by which the NHS intend to cut the rate of growth in spending – but the spend will continue to rise year on year.
The Committee repeatedly pressed the panel on whether these efficiencies are achievable without simply reducing people’s access to CHC funding.
Mr Stevens confirmed that year-one savings suggest it is possible. He said that the plans are to improve standards to make the CHC system more effective and efficient, for instance through better procurement of care, better case management, better training in assessments, less resource tied up in assessments and reducing admin costs. The Committee pressed the panel on whether they can be sure that efficiency savings are not going to force people to accept inadequate levels of care.
The Chair asked the panel how they will ensure that vulnerable people know what CHC is and how they can find out if they are entitled. The panel said this is down to cascading via health professionals and communicating with simpler language. They noted that Beacon’s Information and Advice Service provides free advocacy and support via a telephone helpline.
END
If you need information or advice about accessing NHS Continuing Healthcare, call Beacon’s free Information and Advice Service on 0345 548 0300 or email us.
