Recently in palliative care Category

A report this week revealed that people in more deprived areas are more likely to die in hospital than those from more affluent places.

In this guest blog, National End of Life Care Programme social care lead Tes Smith argues that social workers have a key role to play in narrowing these inequalities in death.

Fairness is much in the news at present, not least in the shape of the stubborn gap between rich and poor. As in life, so in death it seems. This week, the National End of Life Care Intelligence Network identified that people living in deprived areas are 7% more likely to die in hospital than those residing in the most affluent areas.

Surveys consistently show that most of us would prefer to die at home or in another community setting, such as a hospice, rather than hospital.  Reducing the percentage of deaths that take place in hospital is a key objective of the Department of Health's national end-of-life care strategy.

A small fraction of the gap identified in this week's report - one seventh - can be accounted for by differences in factors such as the cause of death and life expectancy. Individuals affected by some conditions that affect more people in deprived areas, for example chronic obstructive pulmonary disorder, sometimes prefer to be cared for in their final days and hours in hospital.

However the report does raise issues around equity of access to housing and care services that allow people to exercise choice over where they are cared for and, ultimately, where they die. Social care professionals can do something about that.

Social worker role

Yes, death might come after months or even years of high tech medical interventions - whether pharmacological, surgical or technological. However, social care services often have regular contact over a long period with an individual as they become more frail - and with their family or informal carers.

We can liaise with services such as housing and occupational therapy to ensure the individual's home is both decent and equipped with any aides and adaptations needed to support them in their final days, weeks or months.

More powerfully however, we can support individuals nearing the end of life and their carers so they can access the services that will allow them to die at home or in a hospice if that is their wish. This can involve putting in place a package ranging from transport services to specialist pain relief services and community nursing.

With our assessment, communication, co-ordination and care planning skills we should be working with health colleagues in hospitals and the community. We can advocate on behalf of clients who might lack either the verbal skills or self-confidence to effectively pursue such care packages themselves and co-ordinate the delivery of services. With ethnic minorities over-represented amongst the most deprived in our community, there might be language barriers that we can help overcome.

Sharp elbows

The broader social care profession should be working with specialist palliative care social workers in hospices and hospitals to champion the interests of those whose voice might otherwise be lost.

When asked why he thought his new National Health Service would survive, Nye Bevan is said to have replied that the 'sharp elbows of the middle classes' would make quite sure they and their families had access to high quality free healthcare.

Perhaps it is part of the social care professional's role to play the sharp elbows of those less able to voice their wishes and preferences for care in this age of choice. Care provision at the end of life might be a good place to start.

Martin Green, chief executive of the English Community Care Association and government dementia champion, could face the sack if pro life campaigners get their way.

Over the weekend Green told the Telegraph he backed the legalisation of assisted suicide for adults with capacity, with appropriate safeguards. He argued it was a logical extension of the choice and control mantra of the health and social care sectors.

Now the Society for the Protection of Unborn Children has lashed out by calling for him to be fired from his government dementia advisor position.

Paul Tully, general secretary of SPUC, said: "Mr Green is clearly not interested in caring for some dementia sufferers. He seems to want them dead.

"Not only would legalising assisted suicide for the elderly create insecurity and a sense of worthlessness among older people, it would also provoke discrimination and prejudice among carers and care home staff. Imagine a government advisor on race relations saying that immigrants found it difficult to commit suicide and so should be helped to do so," he added.

I don't think it's likely he'll get the sack and here's why: Green was expressing a personal view. A view, which doesn't necessarily conflict with his role and ECCA or the DH and, in 2011, is fairly mainstream.

What the Telegraph article doesn't mention mention is that Green has previously suffered with cancer. So it's understandable that he should have a strong view (Green rarely has anything but strong views) on what should be allowed at the end of life as I imagine most people faced with such a diagnosis would find themselves giving it some thought.

Therefore, I suspect that he has given it a more detailed appraisal than most. Adding that to the debate, which is a heated one on both sides, can hardly be seen as irresponsible and whether you agree or disagree with him surely forthright reasoned voices are just those that you want advising the government on assisted suicide, dementia or any aspect of policy.

Social workers and social care professionals need more training when it comes to dealing with end of life care.

Moreover primary and community care services need transforming to allow more people to die at home as outlined in the Government's End of Life Care Strategy, requiring proactive, integrated, collaborative planning and commissioning.

These are two key conclusions from a report out today by the National Council for Palliative Care, which points out that training is variable and that for many people, death is still a taboo subject.

Guest post by Daniel Sidthorpe

Towards the end of her husband Malcolm's life, carer and dementia campaigner Barbara Pointon found herself second guessing what his last wishes were.

Dementia had robbed him of the ability to talk or make facial expressions. They had no plan in place for the palliative care he should receive and he could no longer make one.

That's why she spoke movingly about her experience at the launch of the dying matters coalition's guidance for professionals on palliative care planning for dementia entitled Difficult Conversations, last Tuesday.

The main objective of the booklet is to provide social care practitioners with information on how to deal with dementia and ensuring you have prepared yourself for when a person approaches the end of life. 

The guide stresses the importance of having the conversation about the end of life early so families and services can prepare and provide for the wishes of the person at the end of life. It is important for these conversations to happen because it could stop your carer constantly second guessing what you would like to do.

Through this booklet, the conversation between people about dementia can be made a lot easier and more reassuring. 

Guest post by Daniel Sidthorpe

The Palliative Care Funding Review did not go far enough in supplying more cash for hospices, the chair of the All Party Parliamentary Group on Hospice and Palliative Care claimed this week.

Fabian Hamilton said he did not agree with the review anyway because hospices funding never reached the targets that it was promised by the NHS. He pointed to the previous govenrment's desire to have 50% of hospice funding from the public purse, stating this only ever reached 25% is his own constituency.

According to Hamilton, the review said: "You're doing OK without us so you don't actually need the extra money".

He added: "Hospices have got to work harder to raise the money to keep themselves going, and ultimately if they don't raise the money, then the brilliant and wonderful care they give people at the end of their lives, as well as the palliative care, is just not going to be there for everybody."

When asked about the impact of lack of funding, Hamilton said he was frustrated that the government do not put money into things that cost money now but will save money in the future.

In case you were in any doubt as to how bad the financial climate is for care home owners at the moment analysts Laing and Buisson have quantified it.

Homes are receiving an average 2.5% real terms cut in their fees.

What can they do to change this? Well, very little in the courts it would seem.

Yesterday, the Birmingham Care Consortium, which has over 80 member organisations, had its case for a judicial review to overturn a council freeze on fees rejected by the High Court yesterday.

The Birmingham Mail reports that the judge said the appeal was premature while the council were still finalising fee levels for the coming year.

That doesn't seem to leave much room for manoeuvre for beleaguered care home operators and the suggestion of Laing and Buisson's chief executive, William Laing, that the government should step in to set fee levels will probably start to look increasingly attractive .

It's not very often you can claim victory over the government, but today is one of those days.

Yesterday, the government shelved any plans to abolish any of the social care duties on councils. The consultation which could have seen their abolition caused widespread outrage when it was unveiled in March.

Indeed the government is now saying that it never intended to get rid of any of these duties which were on the list as a result of the consultation. In fact, it never said it would.

Well, that's not the way I read their original statement, it wasn't the way Labour MPs read it, it wasn't the way founding father of disability rights Lord Alf Morris read it, it wasn't the way the unions read it, it wasn't the way social care charities read it and it wasn't the way Community Care readers read it either.

That's why they wrote to the DCLG in their droves.

That might not have happened had Community Care not been the first media outlet to publicise it.

Greg Clarke, minister for decentralisation, yesterday acknowledged that media interest had heightened responses urging the government not to cut the duties around adult or children's social care.

If I was being generous I might say the whole thing was simply a misunderstanding, crossed wires on the government's intentions. But part of being in government is being responsible. And if you hastily put together and all-encompassing list of statutory duties and sell it as an opportunity for people to get their least favourite whiped off the statute book, you can't be surprised when people think you might actually do it.

Thankfully, it looks unlikely to happen now as Clarke has acknowledged the primacy of the Law Commission and Munro reviews in adults and children's social care respectively.

You, readers, made that happen and I, for one, am proud to have been a part of it.

Image by Ste on Flickr

You might want to think twice if, like me, you had set a date in your iPlayer diary to catch-up on Terry Pratchett's Choosing to Die, broadcast last night on BBC2.

If you've got delicate sensibilities it may be a bit much.

"Shocking" is the verdict from the Herald, while "chilling" and "uncomfortable" are chosen words of The Independent.

However, "moving" is the verdict from the Telegraph this morning and the Metro reports tweeters hailing it as powerful.

This is one programme which demands to be seen, if only to establish where on that wide spectrum you sit.

Dying people need collaboration not competition, Help the Hospices has told the government's NHS reform listening exercise.

"For far too long poor quality NHS commissioning has been a barrier to hospices as they strive to meet the needs of an ageing population," Jonathan Ellis, director of policy at Help the Hospices said. "So in order to achieve more and better collaboration across hospice and palliative care, it is essential the principles of collaboration are embedded within the new commissioning processes.

"These reforms come at a time when hospices are being expected to do more, while receiving less from the NHS to do so. Without making collaboration and partnership working central to the reforms, the transition from the old system to the new could lead to chaos among providers and directly affect the delivery of high quality care for people who are dying."

NICE has appointed a social care expert to help it deliver quality improvement and advice within the social care sector.

Colin Angel, head of policy at the United Kingdom Homecare Association (UKHCA), will work one day a month to help NICE fulfil it's expanded role as quality beacon across health and social care.

Angel said his first meeting with Andrew Dillon, chief executive of NICE, had been encouraging.

His application has been backed by the Care Provider Alliance and he will represent all strands of social care provision, not just homecare, as NICE develops it's quality standards for the sector.