ConDem: can they afford to care? Join the carers debate July 1

We’re about to discover whether the coalition government can afford to care. On July 1 Westminster MPs will discuss the future funding for carers, a debate health care professionals and unpaid carers will be awaiting with trepidation.

There are 6 million unpaid carers in the UK, while under 1% of the UK’s population receives Carer’s Allowance.

Image: Michael Summers @ Flickr

They have already suffered an ominous sign. Earlier this week, Dr Hamish Meldrum, Chairman of Council at the BMA (British Medical Association), said that despite the government’s best assurances that front-line services will be protected, cuts are already having an impact on doctors’ ability to care for their patients.

Ahead of the elections, I covered a story that highlighted the need for a fully comprehensive Care Strategy to protect and support unpaid carers. Despite the urgent need for reform, the attempts by the three main parties to work together on an effective health care policy broke down into inter-party bickering.

Will a coalition government prove any better at supporting the six million unpaid carers in the UK?

At the steering wheel, will Clegg and Cameron show their support for unpaid carers

Image: Andy Martini @Flickr

Unpaid carers save the economy £87 billion every year; they give so much to society yet as a consequence of caring they’re twice as likely to suffer from ill health, as well as facing isolation, poverty and discrimination.

In March I met three people that will be directly affected by the carers debate on July 1. Here’s their story.

My life as a carer

Mary Pearson, 66, was an unpaid carer for seven years. Her mother Lily broke both her legs and was left unable to walk and became completely dependent on her daughter who provided her with 24-hour care. The strain of caring meant that Mary’s health seriously suffered; the day came when Mary couldn’t cope any more and had to put her mother into a nursing home. That evening, Mary was admitted to hospital with a leaking heart valve.

“The situation for carers at the moment is very difficult,” says Mary.

“We simply don’t get the back up or support. When my mother came home from hospital they promised me all the help I could get but when I tried to find it, it simply wasn’t there.”

Mary stresses the importance of providing respite for families, so they can have a complete break secure in the knowledge that their loved ones are being looked after properly. “This is really, really necessary,” says Mary. “I used to have to get up two or three times a night to take my mother to the bathroom. It was a 24-hour caring situation. I don’t think the government realises how much carers take on.”

Having struggled to find respite care for her mother, Mary says the government needs a policy that would give carers a break. “They need to put the money in the right place,’ says Mary. “Unless they provide people to sit with your mother when you need to leave her, then just throwing money at the problem isn’t going to help.”

Ways to improve the care system

Hameed Mohamed owned a residential home for 10 years and is about to set up a new care agency. He believes carers don’t get enough help from government resources, and stresses the importance of providing carers with practical skills accrued on training courses. “People often find that they’ve taken on a role of carer with no training in handling, bathing and that sort of thing,” he says. “They’re just expected to know but really they need support.”

Hameed also expressed his concern that there aren’t enough quality care agencies out there. He says:

“Social services contract agencies based on price rather than quality. I don’t feel that they investigate care agencies thoroughly enough. They often wait for something to happen before they act. Yet it’s not social services fault; they themselves are limited and suffer under government cutbacks.”

Hameed would like to see the three major parties working together to decide on one policy to support unpaid carers. “Every time there’s a new party elected there’s a whole set of new policies,” he says. “If they worked together it would benefit everyone; carers, older people and social services.”

The expert advice to politicians

Professor Baroness Ilora Finlay is a leading expert on palliative care in the UK and is a consultant at a cancer centre in Cardiff, Wales. She argued that Westminster politicians could learn a lot from what the Welsh Assembly Government (WAG) has achieved in the management of Wales’ health service.

There have been strategies introduced in Wales that nowhere else in the UK has put in place, such as the seven-day nursing care service. “By June we’ll have specialist nurses across the whole of Wales available seven days a week,” said Baroness Finlay, “as well as consultant advice available 24-hours a day, seven days a week, throughout the whole year.”

She explained that the organisation of the health service in Wales is now very different to England. She says:

“We’re working with very different processes and we have a lot less policy change. Because of this we have a much more stable NHS.”

Baroness Finlay believes that the dramatic improvement in Wales’ health care system proves that comprehensive reform across the UK can be achieved, but only if politicians commit to a single, substantial policy.

The Future

Gordon Conochie, joint policy and parliamentary officer at The Princess Royal Trust for Carers, asks on his blog what has happened to pledges for carers. I simply echo his words: “The election is passed, new ministers are appointed and the waiting must end – it’s time for change.”

Do doctors have the right to assist suicide?

The time has come for legalising assisted suicide and I want to be a test case for a euthanasia tribunal, declared Sir Terry Pratchett. I want pop-in euthanasia booths, added Martin Amis. We support terminally ill people’s right to die, cried 80% of the British public. (Figures by the National Centre for Social Research 2010.) It seems that support for assisted suicide is sweeping the nation.

Terry Pratchett is ready to be a test case for a euthanasia tribunal

Image: Robin Zebr0wski @ Flickr

This week Dr Michael Irwin, dubbed “Dr Death”, hit the headlines once again; he avoided prosecution after accompanying a cancer sufferer to Dignitas where he later ended his life.

Many argue that the current legal situation surrounding assisted suicide offers no safeguards; it does not protect those who do not wish to die, or provide any guidance to doctors and family members who have been asked to assist in voluntary suicide. It also results in many ending their life prematurely, while they are still capable of doing so.

Yet the fear that legalising assisted suicide will put pressure on a very vulnerable group of people, many of whom already feel like a burden, is a very real concern. Simply by making assisted suicide legal and therefore socially acceptable could be enough to make some people feel duty bound to take their own life, this is an issue that cannot be ignored.

Simon Stevens, an active campaigner for disability rights, speaks out against assisted suicide

Image: Simon Stevens

Simon Stevens is a leading independent disability consultant and trainer with vast experience in disability equality. He is an active campaigner for disability rights and over the last 15 years has worked for organisations including Scope, Warwick University, the BBC and the Council of Europe to help improve the situation for disabled people.

Born in 1974, Simon has cerebral palsy. He says it affects his speech, balance, hand control, and even his sense of humour – in a good way. Despite his difficulties and the everyday discrimination he faces because of his disability, Simon is rightly proud of his achievements; winner of a 2004 Enterprising Young Brit award and a 2008 UK Catalyst Award, he proves that cerebral palsy doesn’t have to get in the way of running a successful business or two.

Although Simon says that he’s tried to stay open minded about assisted suicide he has decided to speak out. He’s worried that recent support for euthanasia, that’s been extensively covered by the media, has already made it socially acceptable. “I realised that increasingly the media would portray the death of disabled people in ‘mercy killings’ as acceptable”, he said. “It appears that when a parent kills a non disabled person they are deemed evil while when a parent kills a disabled child they are presented as a hero.” Simon believes that this is because disabled people are treated as second-rate citizens, as though their lives are not worth as much.

“When a parent kills a disabled child they are presented as a hero”

By legalising assisted suicide it will make people with disabilities and terminal illnesses feel like a burden and there will be increased pressure, however indirect, to commit suicide out of a sense of duty, says Simon. “Society will increase the pressure until it becomes a duty imposed upon the family. I worry that a situation will occur whereby society will assume that terminal illness should lead to suicide.”

“Society will assume that terminal illness should lead to suicide”

Speaking from his own experience, Simon is fearful of the impact that legalising assisted suicide could have on those who are struggling to cope. Last March, at the peak of his paralysis, Simon wanted to end his own life. “There was a point when I did want to die, and indeed it was not the first time I considered suicide”, he explained. “But both times it was because I was unhappy with my environment and the lack of certainty. Once I knew what was happening and regained control I became happy; it was never about the illness. People may argue that it is different for me because I knew I would get better, but that was not the case. The hospital had written me off and sent me home; I had no desire to improve my situation and I didn’t believe it would improve.”

This is why Simon is adamant that improvements in the health service and social services would reduce the number of people thinking about assisted suicide. “If people have good quality support and healthcare they can manage their conditions better”, he said. “I would like to see a legal guarantee to appropriate and responsive rehab in a speedy, coordinated, and informed manner.”

Failing to work closely together to provide effective healthcare for chronic or terminal conditions is a criticism that the NHS and social services often faces. This is an issue that both pro and anti euthanasia campaigners seem to agree on. Jo Cartwright, campaigns officer for Dignity in Dying, said, “We believe assisted dying should be a choice for people who are terminally ill and mentally competent. For this to be a real choice the individual should have had full access to palliative care. At the moment not all people have access to good quality palliative care, so this needs to be addressed.”

Yet, Dignity in Dying state that even the highest quality of palliative care cannot alleviate all suffering, and it’s for these people that they campaign for assisted suicide legislation.  Jo said.

“At the moment assisted dying is going on, either by people travelling abroad to die or being helped to die here in the UK, with or without success. There are currently no safeguards, and retrospective prosecutions don’t help the individual who has died if there was coercion.”

Jo argued that assisted suicide legislation with upfront safeguards would protect people who do not want to die. While also protecting those who want that choice; they would not longer have to travel abroad to die earlier than they would want, while they physically can.

Former chairman of Dignity in Dying, Dr Irwin, hit the headlines this week as he avoided prosecution after taking a cancer sufferer to the euthanasia group Dignitas in Switzerland where he later ended his life. His was the first assisted suicide case not involving family members or friends to be considered by the Crown Prosecution Service since the landmark guidelines were set out by the director of public prosecutions (DPP) in February, and has prompted fresh claims that the crime is being effectively legalised by the back door.

Yet an interview I conducted in March with Baroness Ilora Finlay, a world authority on the care of terminally ill cancer patients, saw her defend the guidelines. Ilora, a consultant doctor at the cancer centre in Cardiff, Wales, shares her own story of sickness and suffering and reveals her passionate views on assisted suicide.

(Note: This interview was conducted in March 2010 and is therefore not a reaction to Dr Irwin avoiding prosecution)