Dying Matters

Whatever the result of the election, and whatever promises were made, we are all still going to die. Three million UK citizens die during a five year Parliament, and millions more are bereaved. Better palliative care is one area where the NHS and social care system could make huge improvements in compassionate care and make considerable financial savings. 50 per cent of deaths are in hospital, yet fewer than 5 per cent of people say they want to die in hospital. Hospital costs at the end of life can be more than five times the cost of social care in the community, yet fewer than one in ten Clinical Commissioning Groups commission dedicated nurse-staffed palliative support, advice and co-ordination for dying people, their families and carers around the clock.

Unsurprisingly, there are significant variations in the quality of care that people experience depending on where they are, what services are available and what conversations they’ve had about dying. Kate Granger is an inspirational doctor with terminal cancer. She works with elderly patients and has this advice on death planning. ‘The most important first decision is “‘where?”’ Preferred place of death is rarely achieved in the UK and I think that’s because we don’t plan properly. It takes a lot of effort and preparation to die at home successfully. I personally think if it is someone’s wish to die at home and they have been diagnosed with an incurable condition, the planning for that event needs to start then. Patients and families need early conversations with health and social care professionals about what support and resources are available so that expectations are not dashed. Anticipatory medicines need to be in the house long before the final crisis.’

A death plan, like organ donation, is far more useful if you tell everyone. Anyone who might possibly find you on the floor one day needs to know your wishes. If you don’t want to be resuscitated, ask your GP to counter sign an official Do Not Resuscitate form and have on display so anyone coming to your aid can see it. The front of the fridge is a good place. If you don’t have it on display, you’re may be transferred to hospital for intensive treatment rather than cared for in your home.

Most palliative care is given by carers, community and hospice nurses but it’s also important that a doctor sees a patient who is terminally ill at least once a fortnight. As one Eye reader observed: ‘Our father died recently at the age of 90, after a being in bed for a month at home. The district nurse attended from the start and emphasised immediately that this was a case of “end of life care”. The care provided during this last month was excellent. My mother and my four attended regularly throughout this period, together with the various district nurses, day carers and night carers.

Eventually swallowing became difficult for my father and the district nurse fitted a morphine syringe pump. We were told that death was likely to follow within days, which duly occurred. Despite this being the most anticipated death possible, we were amazed to be advised by the GP certifying death, that because our GP had not attended in the previous two weeks, he was obliged to inform the police of a possible suspicious death.

The police turned up, we were questioned as suspects and the body inspected for evidence. The policewoman told me that this was a common occurrence for anticipated deaths, and it also happened to our neighbour. The body was then taken to the coroner’s mortuary, where eventually after a delay of several days, it was released to the undertakers. This episode caused unnecessary distress to my mother and I, and wasted the police and the coroner’s time.’

GPs are not obliged to visit a terminally ill patient every 2 weeks, and if a patient dies having not been seen by a doctor in that time it can usually be sorted out by a phone conversation with the coroner, without needing a post mortem. However, as this story shows, this is not always the case. MD has just experienced superb NHS end of life care for a relative who died in Sherston, Wiltshire – compassionate, collaborative and competent. Thank you. However, many terminally ill patients cannot get fast and free social care or 24/7 advice and support. And coordination between different services can be very disjointed. Dying, death and bereavement are part of everyone’s life. It’s time they got the attention and support they deserve.

FFI Dying Matters website

There is more advice on planning your death and improving your NHS care in Staying Alive

Funding the NHS fantasy promise auction – whose policies add up?

The pre-election NHS rhetoric has descended into a predictable fantasy promise auction. Politicians know they don’t have a hope in hell of providing a 7 day NHS (Tory), a same day GP appointment for anyone over 75 (Tory), or a midwife by your side every minute of labour (Labour). Even if the money was available, where would we suddenly grow 8,000 more GPs, 20,000 more nurses and 3,000 more midwives (Labour and UKIP)? And is being able to see a GP on a Sunday afternoon really the best use of the NHS’s precious resources? (Tory).

If the NHS is to improve, it needs to be funded at the level of other G7 countries (it’s currently bottom of the league) and it must stop wasting money on policies and treatments that are substandard or don’t have a good evidence-base. According to the best guess of NHS England, the NHS needs a funding increase of £30 billion over and above inflation by 2020-21, to cope with an ageing, frailer population. CEO Simon Stevens hopes that increased productivity and the efficiencies of ‘new care models’ will generate an extra £22 billion, leaving just £8 billion for the tax-payers and politician to fight over. The NHS has never in its history managed such productivity gains, and a far more likely scenario is that, with less money the NHS will just provide less service. The Tories and Lib Dems have pledged £8 billion, or an average real increase of just 1.1% a year. However, with no detail on where the money is coming from it could arrive too late to save the NHS, which is desperately short of cash now. Labour promises a one-off increase of £2.5bn a year over and above inflation now, but it may not be repeated if the tax on houses valued at over £2m doesn’t come good.

The most sensible plan for NHS funding comes from the National Health Action Party, who are fielding just 12 candidates (including 6 practising doctors) The NHAP manifesto proposes a 1p rise in basic rate of income tax to raise around £4.5 billion/year. It would scrap the market within the NHS, which also costs around £4.5bn a year to run. It would renegotiate PFI deals – hospital trusts currently spend £2bn/year on hugely over-priced repayments – and cut the cost of locums (£2.5bn/year) and management consultants (£ 640m/year). It would invest in disease prevention, impose stricter controls and taxes on tobacco, alcohol, sugar and unhealthy foods. It would integrate health and social care, and invest in social care to divert pressure from the NHS. It would use the purchasing power of the NHS to secure better deals on drugs and medical equipment. And it would try to crackdown on tax avoidance and evasion. It argues not just that a healthy NHS requires a healthy economy, but that the opposite is also true. Higher investment in healthcare stimulates economic growth, ensures a healthy workforce and encourages spending in local economies.

The NHAP is unlikely to win any seats but has received a lot of media exposure because its policies are more based on evidence than ideology. Perhaps the biggest lie of all in this election is the government’s claim that NHS bureaucracy has been reduced. The number of managers on the NHS payroll may have been cut, but the staggering complexity of the Health and Social Care Act, and all the new organizations that have to be involved in commissioning and contracting services in a healthcare market has meant vast amounts of time, money and outside support from management consultants and lawyers have been used to try to make sense of it all.

Any change to NHS services, such as transferring more care into the community or providing enhanced services in a GP practice now requires an absurd amount of paperwork and negotiation involving multiple organizations (e.g. CCGs, local area teams, NHS England, Public Health England). The NHS struggles enough getting the contracts right, but has no hope of ensuring that, say, services outsourced to for-profit providers will provide safe, high-quality, good value care1. It has enough trouble trying to ensure its own services are high quality in the current funding crisis. As the Health Service Journal reported, more than 80% of acute hospitals in England can’t meet their own targets for safe nurse staffing levels. That £4.5 billion a year currently wasted on turning the NHS into a market needs to go to the frontline, and soon.

My bidet revolution in the NHS, from the bottom up, is here