Author Archives: Tom Gentry

A long way from home: the challenge of end of life care

Professor Sheila Payne’s recent Knowledge Hub article lays out some of the challenges of achieving a good death for older people (The lure of dying at home: an impossible dream for the oldest old?). In particular, Professor Payne highlights how the aspiration of helping more people die at home is not a straight-forward one.

What the aspiration itself tells us about how people want to die is perhaps more interesting than the specifics of location.

In the first instance, a failure to die at home can indicate poor planning and a lack of appropriate services when people most need them. It is a frequent story to hear of someone’s condition change in the middle of the night and for family or carers to have no support or preparation to deal with a moment of crisis.

The outcome is often an ambulance ride to hospital only to die on a ward.

Older people will often have to deal with pain and have multiple support needs in the last weeks and months of life. These could well be dealt with at home yet the resources and appropriate professionals are not put in place or the GP is not always confident to provide the right support.

Again, the aim is simply to be comfortable and assisted when needed yet people are not able to expect this outside of a formal care setting.

It is for these reasons that many people see dying at home as a proxy for indicating better quality end of life care. Partly on this basis, the previous Government had aimed to set a target for increasing the number of home deaths.

In opposition, the current Secretary of State for Health, Andrew Lansley MP, rejected this notion, in part simply a rejection of targets. The approach the Coalition Government have taken is to propose a tariff for end of life care that would enable people to exercise more choice over how they are cared for at the end of life.

Following a review, the Department of Health has this week opened applications for piloting a new approach to palliative care funding. What the review had grappled with is how to fully support people at the end of life when a large proportion of care comes from social care and, where available, the voluntary sector in the form of hospices and home care support.

Professor Payne highlights this challenge when she dispels the notion that everyone has a comfortable house and loving family to look after them. Simply providing more health care will never be enough to help people have a good death.

However, exploring preferences with individuals and making a realistic assessment of need that takes in all aspects of a person’s life will help to improve their experience of care, regardless of their circumstances. Central to this also means substantially improving the care available to people in care homes.

Truly person-centred care must be the guiding principle not assumptions about what people want or what social resources they have available to them.

This is something the new Health and Wellbeing Boards (HWB) the Clinical Commissioning Groups (CCG), proposed in the Health and Social Care Bill, will need to grapple with. So far, the priority, for the former in particular, has been on improving public health, naturally a vital area of focus.

However, they must not forget their obligations to people at the end of life nor the distance that needs to be travelled to improve outcomes for older people more generally.

Joint health and wellbeing strategies, which the HWBs and CCGs will need to co-produce must include provisions for end of life care. Importantly, they must cover the breadth of services and potential interventions including, for example, housing and benefits support as well as health and social care.

Help the Aged, one of Age UK’s legacy organisations, commissioned research to explore what older people want at the end of life. One participant neatly sums up many of these issues:

“In the end, I asked to take him home. But I had to battle and involve the social worker. Many people want to come home [at the end of their lives].They do better. But I had to battle. Why is it so hard?”

Read Professor Sheila Payne’s guest article

Find out information related to older people in our Knowledge Hub

Regulating health: can the CQC do more for less?

The Care Quality Commission (CQC) certainly has its work cut out. As the independent regulator of the health and social care sector, it is responsible for ensuring every hospital, mental health trust, social care provider, care home (and many more settings beside) are safe and delivering a minimum standard of care for patients/residents.

This is undoubtedly a big job and some people accuse the CQC of not doing it very well.

Last week, the House of Commons health select committee published its report on their recent performance. While accepting there had been additional pressures placed on the CQC, one of the committee’s headline findings was that inspections were down 70% on the previous year.

So that means that the body ensuring safety and standards in health and social care settings carried out 70% fewer inspections to make sure that care was being delivered properly.

Age UK has also challenged the quality of healthcare inspection with its campaign Hungry to be Heard which raised awareness of malnutrition in hospitals. We believe it is a serious failure of care that people are not being supported to eat in hospital and some of the responsibility for this failure must arrive at the door of the CQC.

The campaign did result in a series of spot-checks examining nutrition and dignity in hospital. The outcome has been a number of settings being found to be non-compliant with “essential standards”, so CQC should take credit for responding positively to these issues. Arguably, it shouldn’t need a charity to highlight them in the first place.

The CQC does, however, find itself between a rock and a hard place. On the one hand, the Government is seeking to reduce so-called bureaucracy in the health service and wants to offer greater freedom from centralised control.

There are also the perennial issues of what is proportionate and what can guarantee standards which challenges any system of regulation. The Government’s wider efforts to cut “red-tape” and its ideological bearings will always send the message that less administrative burden is better.

At the same time, failures of care persist. The Health Service Ombudsman’s report Care and Compassion? is an obvious recent example of where the lesser seen elements of care relating to dignity and compassion are simply not up to scratch.

In a system that relies on data returns and fewer inspections, whether or not someone is treated with dignity can fall through the gaps. Put simply, it is much more difficult to capture compassion in a spreadsheet.

Unfortunately, older people are most commonly subject to such failures of care.

The CQC told the health select committee that the number of inspections will start to return to previous levels. It has certainly been under a lot of pressure to register a huge amount of providers since it took on its responsibilities in 2009. This came at a time when their budget was cut from £240 million (the combined budget of its predecessor organisations) to £161 million.

And life is not going to get easier for the CQC. The NHS reforms currently going through parliament foresee an expanded, vibrant market of healthcare providers, all of which must be licensed by the CQC. More than this, having more providers is at the heart of these reforms.

Do we believe, in this age of austerity, that the CQC will have more money to meet the requirements of a growing healthcare sector? To say very unlikely would be generous.

The Government anticipates that choice and competition will be the main driver of quality in the NHS in the future. The message will be: if you’re concerned about the care you’re receiving, go somewhere else.

This could indeed be a powerful mechanism for getting the type of care you want. But ultimately, most people will want the confidence that when they enter hospital, for example, you will at the very least be fed, treated with compassion and leave there feeling better than when you came in.

The CQC has a vital role in making that a reality, particularly for older people as the NHS’s largest users.

For its faults, the CQC is working to a shrinking budget and growing expectations and there’s a great deal it does for which it deserves praise. For example, their Experts by Experience programme (run in part by Age UK) involves service-users in the inspection of care homes and was used on the nutrition and dignity spot-checks. There should also be no doubt that the CQC helps to ensure safe care in the majority of NHS services.

As I said at the beginning, the CQC have a huge amount on their plate and Age UK believes they need more funding to do their role effectively. In an age of austerity and attacks on “red tape”, the Government needs to remember that there is a cost to being the guardians of patient safety.

The potential cost of weak regulation is substantially higher.

Find out more about our care in crisis campaign

What the Government heard about the NHS

In April, the Government “paused” their Health and Social Care Bill. The reason? The public didn’t seem to like it much, nor did many health professionals.  A number of charities, including Age UK, welcomed many of underlying principles but had deep reservations about how some aspects of the reforms, such as public involvement and accountability, had been expressed in legislation.

Ten weeks later, the Government has concluded its listening exercise. Earlier this week, the NHS Future Forum, a panel of experts and senior clinicians co-piloting the listening exercise, published their recommendations. The Government has now responded, setting out how it now intends to take the Bill forward, taking on board many of the NHS Future Forum’s recommendations.

Age UK had five key things we want to see the NHS doing after the proposed reforms:

  • Delivering better outcomes for older people
  • Better public and patient engagement
  • Ensuring accountability
  • Stronger Health and Wellbeing Boards
  • Promoting integration between services

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Ready, steady…. stop

This week, the NHS Alliance holds its annual conference, bringing together a legion of professionals working in primary care and the many people who want to speak to them. One group of professionals is likely to be particularly popular. GPs, who will soon be holding the NHS credit card, will not be short of networking opportunities.

Hip replacement: Photo - jilly andi via Flickr

Photo: Jilly Andi via Flickr

Given the expected budgetary pressures facing the NHS, the conference is perhaps unfortunately titled “The Cutting Edge”. This does, of course, focus the theme on innovation, but out in the real world we’ve started to see the clearest signs of PCTs starting to tighten their belts.

While there have been plenty of anecdotal reports of reductions in services and staff numbers, a second PCT has this week identified specific procedures and treatments it will no longer fund. The headline grabbing treatments would perhaps surprise some that the PCT ever funded them at all – the likes of tattoo removal or hair transplantation. It is debatable to what extent refusing to pay for the featured treatments would impact on a person’s overall health and capacity.

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