http://www.carenotkilling.org.uk/
http://news.bbc
.co.uk/1/hi/uk_politics/7953570.stm
PDF version Children and adults with learning disabilities are being ignored by the government because current policy is too focused on care of the elderly, a coalition of charities claims today.
In a joint letter to the Guardian today, the heads of 15 charities warn of a £200m shortfall in funding and express dismay at the "needless hardship" inflicted on individuals and their families.
The complaint that older people have usurped political attention is unusual but one that may become increasingly common as the age profile of the UK population tilts in favour of pensioners. There are already more people aged over 65 than under 16 in the UK.
The Learning Disability Coalition of charities – which includes Mencap, the Down's Syndrome Association, Turning Point and the National Autistic Society – says the government's green paper on care, published last week in a fanfare of publicity, virtually ignores those in younger age groups.
"You would think," the letter says, "that after the neglect, abuse and institutional discrimination against people with learning disabilities revealed over the last few years ... it would be hard to forget the one and a half million people with learning disabilities. Not so.
"The long awaited green paper on the future of adult social care and support, Shaping the Future of Care Together, which does contain some very positive proposals, concentrates almost exclusively on how to fund social care for older people."
The number of people with learning difficulties in the UK has been increasing at around 3% a year as advances in medicine enable more people to survive life-threatening conditions.
Heather Honour, director of the Learning Disability Coalition, said: "The government's green paper was focused on the elderly. We all know that's a big issue, but equally there's a whole question of how the social care system looks after people with learning disabilities.
"People are already not getting the services they need, they are getting cut out of services – courses perhaps cut back to one day a week. We calculate that there's a £200m shortfall.
"People don't see those with learning difficulties as vote-winners. It's not seen as a sexy political issue. It's easy to forget these people."
http://www.guardian.co.uk/society/2009/jul/24/care-green-paper-learning-...
Morphine is a safe and effective pain killer and should never cause death, according to a major new study which explodes the myth that doctors use the drug to hasten the end for terminally ill patients.
The new research comes in the wake of controversy around the case of Kelly Taylor, a 30 year old woman with Eisenmenger's syndrome, who is currently seeking legal permission to be heavily sedated with morphine and then dehydrated until she dies.
A speaker on Radio Four's 'Thought for Today', the Rev Alan Billings, Director of the Centre for Ethics and Religion at Lancaster University, courted controversy last week by commenting on the case and implying that morphine frequently ends the lives of terminally ill people, and causes sedation when given in doses necessary to relieve pain.
Commenting on the new research, Andrew Thorns, Chair of the Ethics Committee of the Association for Palliative Medicine representing 800 UK palliative medicine doctors, said: 'Morphine is a safe and effective pain killer. It should never be necessary to give such high doses of morphine for pain that the patient dies as a result.
Only in massive overdose would this be the case and this should never be the intention of any doctor. Research and clinical practice shows that good symptom control involves far more than simply prescribing medication and can be achieved without the risk of shortening life. The dose of morphine should be adjusted to meet the individual patient's pain requirements, with the aim of allowing the person to be free of pain without the development of unwanted side-effects. '
The study by Estfan and Colleagues at the Taussig Cancer Clinic in Cleveland, USA, is published today in the leading medical journal, Palliative Medicine, and involved 30 patients with severe cancer pain.
It demonstrates clearly that when prescribed properly in patients with severe pain, opioids drugs like morphine do not cause respiratory depression. There were no significant changes in objective measures of respiration such as oxygen saturation and CO2 before and after the pain was controlled.
Rob George, London Consultant in Palliative Medicine, commented: 'Doctors in palliative care are never faced with the dilemma of controlling severe pain at the risk of killing the patient. They manage pain with drugs and doses adjusted to individual patients so that they can be comfortable and able to live with dignity until they die.'
'It is most regrettable that the truth about morphine's safety and efficacy never appears in the general press while claims about the so-called double effect, euthanasia and doctors “killing” with morphine automatically do.'
In the same edition of the journal, George and Regnard, in a commentary on the research, highlight the erroneous linkage between morphine and the so-called 'Double Effect'.
They point out that, unlike many other drugs, morphine and other opioids have a very wide safety margin; that evidence over the last 20 years has repeatedly shown that, used correctly, morphine is well tolerated, does not cloud the mind, does not shorten life, and its sedating effects wear off quickly. In fact, inappropriately high, toxic doses may cause agitation and distress rather than respiratory compromise.
Dr George added: 'When correctly used to relieve pain in a patient who is terminally ill, morphine like drugs should never cause death. By contrast they may well lengthen life and certainly improve its quality.
“Our key priority must be to ensure that the public are properly informed about the safety of pain and symptom control and to make the best palliative care more widely accessible. We need to overcome the postcode lottery of palliative care that currently exists in this country.'
The new research also comes in the wake of Baroness Ilora Finlay's Palliative Care Bill, which seeks to make good quality palliative care more widely accessible in England and Wales. This bill had an unopposed second reading in the House of Lords on Friday 23 February. It will now proceed to a Committee of the Whole House and thence to a Third Reading. If it passes a Third Reading, then it will proceed to the House of Commons, but only if it is granted time by the Government.
Dr George concluded, 'We call on the Government to make time for this landmark bill, in order to ensure that all terminally ill patients in the UK benefit from the very best care available.'
The Ethics Committee of the Association for Palliative Medicine (APM), represents an organisation of over 800 palliative medicine doctors working in hospices, hospitals and the community across England, Ireland, Scotland and Wales. The APM is a member org of Care NOT Killing.
http://www.carenotkilling.org.uk/?show=392
Financial support
Benefits for the person you care for
The person you care for may be entitled to:
- Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
- Attendance Allowance, if they are 65 or over and need help with personal care
- Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work
There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.
Carer's Allowance
As a carer, you may be entitled to receive Carer's Allowance. You can keep on getting this for up to 12 weeks if the person you care for goes into hospital and for up to four weeks if they go into a care home provided certain conditions are met.
If the person you care for dies, Carer's Allowance will usually stop after eight weeks.
Practical support
Support from social services
The social services department of your local authority may provide a range of social care services and equipment for terminally ill people.
Assessments from your local social services
An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you as a carer are entitled to a carer's assessment.
Emotional support
Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you're caring for and other family members may also benefit from counselling.
Finding a counsellor
The British Association for Counselling and Psychotherapy (BACP) is the professional body for counsellors. You can search for registered counsellors in your local area on their website.
Support groups for carers
There may be support groups for carers in your local area, which could give you the opportunity to talk to other people in the same situation as yourself.
Help with caring for someone at home
Medical and nursing care
If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their local doctor (GP). Services that may be available include:
- visits from a district or community nurse (for example, to change dressings, give injections or help with bathing or toileting
- help with getting the person into and out of bed
Services that are provided by the National Health Service (NHS) may vary from region to region, but will always be provided free of charge.
Short-term breaks
Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local social services department. A local carers group may also be able to provide, for example, half a days care a few times a month.
Employing a professional carer
If youre caring for someone who needs a lot of care, you may choose to employ a professional carer (or carers) to share the caring role with you.
Alternatives to caring for someone at home
Hospice care
Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.
Hospices specialise in palliative care, which aims to make the end of a person's life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counselling.
Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.
There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.
Hospital care
There may be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, the NHS and your local authority should work together to meet their continuing health and social care needs. The person's needs should be assessed before they leave hospital and a package of care arranged for them.
Care homes
If the person you care for needs a level of care and support that cannot be provided in their own home, a care home could be the answer. You can find detailed information about care homes in the health and well-being section of Directgov.
Helping the person you care for prepare for death
It's natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want (or don't want) at the end of their life. The 'rights and responsibilities' section of Directgov contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.
When the person you care for dies
What to do after a death
When someone dies, there are some things you will need to do straight away, or within the first few days and weeks. The rights and responsibilities section of Directgov includes guidance on what to do after a death.
Bereavement counselling
When someone close to you dies, you may benefit from counselling from a specialist bereavement counsellor. The charity Cruse Bereavement Care can help with this.
Benefits and bereavement
If the person you care for dies, Carers Allowance will usually stop after eight weeks.
If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:
- bereavement payment a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
- widowed parents allowance for people who have dependent children
- bereavement allowance for those aged 45 and over when their spouse or civil partner dies
http://www.direct.gov.uk/en/CaringForSomeone/CaringAndSupportServices/DG...
The recent ruling by the law lords in the case of Debbie Purdy has re-ignited the debate over assisted suicide.
Polls suggest that while a majority of the public would support a change in the law to allow assisted dying, most doctors are against it.
But there is evidence that some clinicians may already be using continuous deep sedation (CDS), as a form of "slow euthanasia".
Research suggests use of CDS in Britain is particularly high - accounting for about one in six of all deaths.
 |
 It seems that there's substitution from the practice of euthanasia to the practice of continuous deep sedation  Dr Judith Rietjens
Erasmus University Medical Centre in Rotterdam |
Every year more than 1,000 people are admitted onto the wards at St Christopher's Hospice in Sydenham, south London.
It is at the forefront of research and education in end-of-life palliative care.
Dr Nigel Sykes, medical director, said only a handful of patients each year require sedation to make them unconscious at the end of their lives.
"Deep sedation, in the sense that you are wanting to make someone unaware of their surroundings, they are asleep, comatose, that is something that is required very uncommonly indeed."
Last option
Dr Sykes said CDS can be appropriate for patients who become confused and deeply agitated - but only when nothing else can relieve their distress.
|
There is really no excuse for a doctor to take the line of consciously using deep sedation as an alternative to euthanasia because he can't think of anything else to do Dr Nigel Sykes
St Christopher's Hospice |
But research by Clive Seale, professor of medical sociology at Bart's and the London School of Medicine and Dentistry, suggests the use of CDS across the UK is far from "uncommon".
"The only other two countries where the prevalence has been measured is in the Netherlands and Belgium," said Professor Seale.
"The surprising thing was that in the UK the prevalence of continuous deep sedation until death was very high indeed, 16.5% of all UK deaths."
That is twice as high as in Belgium and the Netherlands.
But while rates of CDS in the Netherlands appear to be rising, the use of euthanasia has declined.
Cancer patients
Dr Judith Rietjens, from Erasmus University Medical Centre in Rotterdam, said this shift is particularly marked among GPs looking after cancer patients.
"It seems that there's substitution from the practice of euthanasia to the practice of continuous deep sedation," she said.
|
The Debbie Purdy case has put assisted suicide back in the headlines
|
"We can see in our study that those sub-groups where we saw an increase of continuous deep sedation - just in those sub-groups - we saw a lowering of the frequency of euthanasia."
Professor Seale thinks something similar may be happening in the UK.
"There is good evidence from the Netherlands and Belgium to show that quite a lot of doctors who find providing euthanasia very emotionally distressing and ethically difficult, find that providing continuous deep sedation is an easier thing to do," he said.
"In those countries euthanasia is an option - it's legal. In the UK it isn't.
"Whether doctors in the UK are thinking in this way, and nurses as well, is something which is worth exploring more."
There are fears that CDS is being used inappropriately.
Father's death
Dr Philip Harrison, a GP now based in New Zealand, set out his concerns recently in the British Medical Journal, following the death of his father in Doncaster Royal Infirmary.
He was put under continuous deep sedation without being consulted, and so had no chance to say goodbye to his family.
Dr Harrison reached the hospital two hours before his father died.
|
It was as near to a form of murder that I had come across, Dr Philip Harrison
GP |
"I'm 100% certain he would have been horrified to know that he would never see us even though we were coming," he said.
"There was no reason on earth why he would have wished to have been put to sleep, unless he was obviously distressed or agitated or in pain.
"But there was no evidence he was in pain at any stage during his admission."
Dr Harrison, who has long experience in palliative care, decided not to sue the trust - but he did try to get reassurance that it couldn't happen again.
Despite an apology he is still not satisfied.
"I don't know what the legal term is but to me it was as near to a form of murder that I had come across," he said.
"I have never seen that in my medical practice before. I've seen euthanasia once, but I've never seen anybody being put to death without consent."
Dr Harrison said he is concerned about what could be going on across the NHS in the name of caring and terminal sedation. The truth is, no one knows.
No clear definition
Dr Nigel Sykes said one problem was the lack of a clear definition of CDS.
He also points out that many patients close to death lose consciousness regardless of their medication.
He emphasised the importance of discussing treatment - with the patient whenever possible, with the family, and with specialist colleagues.
"There is really no excuse for a doctor to take the line of consciously using deep sedation as an alternative to euthanasia because he can't think of anything else to do.
"There are sources of advice available because specialist palliative care is now available and accessible across the country."
Dr Sykes said there was a need for further research to establish how much sedation is being used, who is using it, and why.
Proposed legislation requiring health boards to provide specialist care for the terminally ill has won a high level of public support, it has been claimed.
A backbench bill being spearheaded by SNP MSP Gil Paterson aims to secure high-quality palliative care on the NHS for anyone who needs it.
The plans have already attracted cross-party support.
They were brought forward amid concern over varying levels of palliative care across Scotland.
Mr Paterson, who said there had been a positive response to the bill, is now hoping to introduce it to parliament at a future date.
A report by public spending watchdog Audit Scotland last year found inconsistencies in the way palliative care was provided.
While such care is largely provided to people suffering from cancer, the bill would seek to extend care to patients with any life-threatening conditions, whether they are in hospital, at home or in a hospice.
In October last year, the Scottish Government announced a national action plan for palliative care, and said an extra £3m a year would be spent on improving services for the terminally ill.
http://news.bbc.co.uk/1/hi/scotland/8251600.stm
Gill Coupland is the co-founder of Angels Housekeeping, a Leeds-based social enterprise that helps older people live independently. Over the past four years her customer base has grown from seven to 350 as the local council's social care budget has shrunk. With the state increasingly withdrawing care services from all but the most needy, and with the population ageing, she believes more and more people will turn to services such as hers.
But Angels is not about profit at all costs. Offering not just cleaning, but shopping, pension collecting and a thorough assessment of any other needs, Angels Housekeeping charges over-60s and disabled people £11.50 an hour, a price subsidised by the services they provide for other clients.
"Voluntary services are realising that things can't stay as they are and if they're going to survive, they're going to have to be more enterprising. There's a network of areas that social enterprise fits nicely into, things like healthy-eating services, getting people exercising."
Her task is to educate the public about social enterprise values. "Once they really understand what it means, they will be more likely to purchase services, in the same way people choose to buy Fairtrade."
http://www.guardian.co.uk/society/2009/sep/30/older-people-voluntary-ser...
The director of public prosecutions has set out new guidelines on assisted suicide.
Keir Starmer has already published draft advice, but has now updated that following a public consultation.
He has said he hopes his intervention will bring greater clarity to the thorny issue of prosecution.
Why has he taken action?
Law Lords ruled last summer that there was a need for greater clarity after hearing an appeal from someone with multiple sclerosis.
Debbie Purdy, from Bradford, had gone to the House of Lords after losing her court case seeking clarification on whether her husband would be prosecuted if he helped her go abroad to die.
Her legal team argued that the DPP had acted illegally by not providing guidance on how decisions over prosecutions were made.
They agreed, saying she deserved to have some information about what was taken into account in such cases.
However, Mr Starmer was not asked to change the law - indeed he does not have the power to do that.
What does the current law say?
The 1961 Suicide Act makes it an offence to encourage or assist a suicide or a suicide attempt in England and Wales.
Anyone doing so could face up to 14 years in prison.
The law is almost identical in Northern Ireland.
There is no specific law on assisted suicide in Scotland, creating some uncertainty although in theory someone could be prosecuted under homicide legislation.
To date, more than 100 UK citizens have travelled to Dignitas in Switzerland to end their lives.
Although some cases have been considered by the DPP, no relative has yet been prosecuted.
What has the DPP published?
He published draft guidance in September, although it came into affect immediately.
Mr Starmer set out a range of factors that might influence whether or not a person would face prosecution.
This has now been updated following a consultation which got nearly 5,000 submissions.
The advice lists a range of factors that will be taken into account when deciding if a prosecution is appropriate or not.
These include whether the victim reached a "voluntary, clear, settled and informed" decision.
There is also particular emphasis on the motivation of the suspect. They would be expected to have acted "wholly compassionately" and not for financial reasons.
The idea is it will give people who were asking their loved ones to help them die an indication of whether they would then face charges.
However, Mr Starmer stopped short of saying he would offer guarantees as the individual circumstances of each case would still need to be investigated.
Did this change anything?
Not the law. The legislation on assisted suicide remains the same.
And Mr Starmer was also quick to point out that this does not affect the legality of euthanasia - whereby someone kills an individual who wants to die but is not able to take their own life.
Such actions are considered to be acts of murder or manslaughter.
However, the DPP said he hoped it would bring greater clarity for people in situations such as those Britons who have travelled to Dignitas.
Campaigners believe it does but, at the end of the day, prosecutors will still be exercising discretion.
All individuals who help someone to die still face a police investigation during which the factors spelt out by Mr Starmer will be taken into account.
Will this lead to a Dignitas-style clinic being set up here?
It seems inconceivable that it will.
The factors set out by the DPP put a strong emphasis on a suspect having to know the person and for it to be a one-off occurrence in order to avoid a prosecution.
This would seem to exclude an organisation or business like Dignitas offering a suicide service.
That organisation is only allowed to operate because of Switzerland's liberal laws on assisted suicide, which suggest that a person can be prosecuted only if they are acting out of self-interest.
In theory someone could help someone buy a drug to commit suicide in this country - a barbiturate solution is used in Switzerland - but this is far from easy to obtain.
Is it possible there could be a change in the law?
There have already been several attempts to legalise assisted suicide, but these have been rejected.
The most recent, in 2006, was defeated in the House of Lords by 148 votes to 100.
It is likely the issue will come before parliament again in the future.
However, public opinion is not easy to gauge. Surveys show mixed results, depending on who is asking the question and how it is asked - although there is certainly an appetite for more debate.
The Minister of State, Department of Health (Mr. Mike O'Brien): In answer to a question following my statement to the House on 9 February 2010, Official Report, column 764, I stated as understood at that time that—
“On 21 April, Dr. Ubani was convicted, received a four-month suspended sentence and made a payment, although it is disputed whether it was a cost or a fine”.
It has come to light that proceedings in Germany against Dr. Ubani were finalised on 15 April 2009 where he received a suspended sentence of nine months and made a payment of €5,000. The CPS understands the sum was a fine, rather than costs.
I hope this clarifies the situation.
http://www.publications.parliament.uk/pa/cm/cmtoday/cmwms/archive/100226.htm#hddr_4
A move to make it legal to help a terminally ill person to die has been defeated in the House of Lords.
The measure would have removed the threat of prosecution from those who go abroad to help an "assisted suicide".
It was proposed by former Labour Lord Chancellor Lord Falconer who said there was a legal "no-man's land" that required clarity.
At least 115 people from the UK have gone to Swiss clinic Dignitas to die, but as yet no-one has been prosecuted.
In a free vote the Lords defeated the amendment to the Coroners and Justice Bill by 194 to 141.
The debate in the Lords thrust the issue of assisted suicide back into the spotlight and drew sharp criticism from church leaders and advocates for the disabled.
Lord Falconer said helping someone go abroad to die should be allowed under a set of strict rules.
Such actions were deemed illegal under the Suicide Act.
The amendment called for the law to be waived if two doctors confirmed the person in question is terminally ill and deemed competent enough to make such a decision to end their life.
The motion also called for the person who wanted to die to declare that it is their decision to have an assisted death abroad and this should be witnessed by an independent person.
Lord Falconer said that while several cases of assisted suicide abroad had been the subject of police investigations, no-one had faced a criminal prosecution.
"Nobody wishes to prosecute in those cases because nobody, in my view correctly, has the stomach to prosecute in cases of compassionate assistance."
He was supported in his move by Dignity in Dying.
However, the Bishop of Exeter, the Rt Rev Michael Langrish, who has a 30-year-old daughter with Down's syndrome, told the Lords that the amendment would be "a legislative milestone on that slippery slope to introducing assisted suicide here in the UK by incremental degrees".
Court battles
The move to change the law came after Debbie Purdy, a 46-year-old from Bradford who is terminally ill with multiple sclerosis, fought a series of court battles over the issue.
She has asked for clarification over whether her husband would face prosecution for helping her travel to Switzerland.
She has already lost High Court and Appeal Court cases and then took her case to the Law Lords.
The Care Not Killing Alliance, an umbrella group of doctors and organisations opposed to changing the law, labelled the amendment "dangerous".
They argued it runs the risk of vulnerable people being pushed into going to clinics like Dignitas against their will.
http://news.bbc.co.uk/1/hi/health/8139512.stm