Scope Chair Alice Maynard responds to the Commission on Assisted Dying

The Commission on Assisted Dying reported back its findings and recommended that under certain circumstances people with terminal illnesses should be allowed assistance to end their own lives.

The Commission was chaired by Lord Falconer, a barrister and former justice secretary, and comprised of doctors, specialists in palliative care, an ex-police commissioner and a former president of the General Medical Council. It’s worth noting that Lord Falconer, as a policeman might say, ‘has previous’. In a past life he introduced an amendment to an act of parliament in order to change the law on assisted suicide. Indeed, it was striking how many of those on the Commission had pre-established views on the issue.

It’s also worth revisiting how and why the Commission itself came into being. It was funded by pro-euthanasia author Sir Terry Pratchett, who has Alzheimer’s Disease, and Dignity in Dying, and they both campaign for the law to be changed.

When I met the Commission – as chair of Scope – I did so in order to state our position on the issue of assisted suicide and to ask the Commission some questions about its role, remit and composition. We took this approach because the Commission has not been sanctioned by Government.

To boil their conclusions down, if you have less than a year to live, are over 18, have the mental capacity to make a decision, and have come to the conclusion entirely by yourself and voluntarily then, with the certification of two doctors, you should be allowed assistance to take your own life.

This debate touches on hugely complex and emotional issues. There are passionate voices on both sides. While the Commission acknowledged this in its research – and some of the discussions in the report are useful and interesting – most of the concerns raised by disabled people seem to have fallen by the wayside in its recommendations.

There is a lot about these recommendations that is unsettling and arbitrary.

The report acknowledges the concern that a change in the law might lead to people being pressured into taking their own lives – whether pressure from relatives, from professionals or as a result of more indirect prejudices about disabled people such as that a disabled person’s life isn’t worth living. While the report underlines the need for checks to ensure that people aren’t put under pressure to end their lives, there is scant detail on how this can be done. A fear of losing these safeguards one of the major concerns for disabled people. But the recommendations are paper-thin on this crucial point.

The report makes the distinction between those who are terminally ill, and those who are disabled. The Commission excludes from legalised assisted dying those with long-term impairments that are not terminal. So the point at which a disabled person becomes someone with a terminal illness is going to be an important consideration.

Many impairments affect people’s life expectancy to varying degrees. The line between a disabled person whose life-expectancy is shortened and someone with a terminal illness can often be blurred – and indeed determined by the person’s own approach to disability – making this distinction unworkable in practice. Prognoses change, people’s circumstances change, and it is notoriously difficult to predict how long someone has to live. To make matters worse, drawing the line at a year can increase the uncertainty of any such prediction.

The Commission rightly notes the importance that health and social care systems have in the lives of many disabled people. And sadly, when it comes to supporting disabled people and giving them the opportunity to live the life they want to lead, these systems often fall short. Many disabled people – including those with terminal illnesses – are not able to live their lives to their full potential, and in an era of swingeing welfare cuts that is likely to get worse.

These issues are important considerations and, though their consideration in the report is welcome, they do not come through strongly enough in the recommendations.

Much of my concern is wrapped up in how society views disabled people. Many believe our lives are not worth living or of no worth to society.  And in these economically constrained times, we can be seen as a burden on society and on our families and communities.  Sadly, professionals who are there to support us sometimes share those misconceptions about our value.  A recent report by the charity Mencap revealed that there have been 74 deaths in NHS care and there is on-going discrimination within the NHS of people with learning difficulties. This highlights an issue with the report’s ‘safeguards’, which rely heavily on the objectivity of doctors and social workers.

I believe that disabled people’s lives have intrinsic value and that, as disabled people, we should be able to get the support we need to live our lives to the full.  That requires protection in law, which is the ultimate safeguard from pressure to end our lives prematurely.

Employment Support Allowance appeal

Guest post from Panther

After having sent all the paperwork and extra medical evidence in for an appeal in November I still hadn’t heard anything so I spoke to the appeals person from my welfare rights team who had helped me fill the forms in yesterday and they advised me to ring the benefits people. Although the welfare rights person is acting on my behalf he said he wouldn’t be able to phone as I wasn’t with him to answer the security questions and give my permission for him to talk to them for me.

For 10 minutes yesterday I was left hanging on the phone while I waited to speak to an advisor, when I eventually got to speak to someone I was told that yes there was a note on my file that said I had requested an appeal and she could see the letter on the system that had been sent in dated 21st November 2011. The advisor told me it can take months for them to reach a decision when they look at your ESA claim again but she would put a link through to the department dealing with it and ask them to contact me to give me an update.

So this morning I got a phonecall from a DWP office in Hyde why I was getting a phonecall from an office in Hyde when I’d been told to send all the paperwork to Cosham I don’t know. The person at the Hyde office told me there was no note on the system saying that I had requested an appeal and that they hadn’t received any paperwork relating to it. They were going to put another link through to Cosham to see if they had the paperwork somewhere.

I then made another phonecall to the DWP on the number I’d rung yesterday and after another wait of over 10 minutes I was told by another advisor who I discovered aren’t advisors at all just call centre workers that the Hyde office are right there is no record of me asking for an appeal or any of the paperwork that I’d sent in to support my appeal. After a very stressful phonecall where I got very upset arguing how could one person tell me there were notes of an appeal being requested plus when I said a letter was sent requesting for an appeal and that letter was dated 21st November I was told yes I can see that, in less than 24 hours all these things have disappeared!!

I’ve now got an appeal form being sent out to me so have to arrange another visit from the welfare rights appeal person again and have been advised by the call centre that I can either send it back in the envelope provided or I can go to my local job centre. But even going to my local jobcentre isn’t straight forward I can’t just pop in there when it is done I have to phone the call centre back and make an appointment to go into the jobcentre because that is the only way I will be given a receipt for the paperwork I take in. How hard can it be for someone to write a receipt?

Apparently on this second appeal paperwork I have to state that this is a second request for an appeal and we want it accepted because the first paperwork was lost. I’ve got to do this because by only now finding out that none of the appeal stuff was received I am passed the time period I had in which to request an appeal.

This afternoon as I sat still thinking over all I’ve heard this morning I decided to try and speak to the Cosham office so I rang again and yet again was in a queue for over 10 minutes to find out that you can’t be put through to a specific benefit office it all has to go via the call centre who put a link on the system then asking that particular office to call you back!

By talking to this third person I learnt that at the call centre they only have access to certain things on the system they are unable to see any correspondence that has been sent in etc so she can’t understand how the first person I spoke to told me she could see the letter I was talking about.

I also finally had it explained to me why there were two offices involved, if I was a new claimant of ESA then my claim would be dealt with in Cosham that’s why letters I receive have Cosham’s address on it. But because I am moving from Incapacity Benefit to ESA it is dealt with by Hyde.

I did get told this afternoon that the person I’d spoken to this morning had put a link into Cosham and they have said they never received any of my paperwork regarding an appeal.

So now I’ve been advised that when I’ve filled out the appeal form and got any supporting evidence together to phone and make the appointment to go to the job centre and get them to fax it over to where it needs to go to as that will be the quickest and safest way of ensuring it is received.

I suggested to the call centre worker that perhaps letters of acknowledgement should be sent out for example when I do a DLA form I receive a letter to say they have received it and it should be processed in X number of weeks. At least if ESA did that I would of known within 2 weeks of send all the information in that my request hadn’t been received and could of acted on it sooner. I said this whole change over of benefits is stressful enough without having to deal with hearing different things from various people when you phone up and paperwork getting lost. The call centre worker agreed with me and said many of the suggestions disabled people had made the call centre workers agreed with but they were just call centre workers on behalf of DWP so couldn’t do anything

Now I just have to hope when I’ve filled everything in for the appeal that it is accepted and then wait for the outcome.

Panther