Assisted Dying Bill [HL]

Debate between Baroness Grey-Thompson and Earl of Listowel

Friday 7th November 2014 Lords Chamber

[Baroness Grey-Thompson]

My Lords, a doctor very explicitly suggesting to somebody that they end their life is one thing. But for me a much greater concern, which has been debated quite a lot already, is about the gentle suggestion that people should consider ending their lives—the arm around the shoulder. I am sitting in your Lordships’ Chamber only because many hundreds of thousands of pounds of NHS money have been spent on putting me back together. I have had some amazing doctors with a dreadful bedside manner, and I have had some doctors with a great bedside manner who have performed procedures that I did not ask for. It was recently reported that a young man, Mik Scarlet, turned down a certain procedure several times. When he was on the operating table, the surgeon completely ignored his wishes and carried out the procedure anyway, and it had to be reversed. He is in a better position now than he was previously. It is a very long and complicated story, which is detailed on the Huffington Post.

For me, this is about the constant drip-drip of “You’re not worth it”. I am a very resilient person. If I got upset every time somebody said to me, “I wouldn’t want to be like you”, I would be depressed. Somebody said to me recently, “Well, I wouldn’t want to be incontinent. That’s my worst thing in life”. I am technically incontinent. If it was not for self-catheterisation, I would probably be dead, because I would have pressure sores; I would not exist. I was having a debate in Central Lobby with somebody who strongly supported my view on where we should go with the Bill. He looked at me and sort of waved at the wheelchair and said, “Well, you must have considered killing yourself hundreds of times”. No, I have not, actually, and I think that it was a bit of a surprise to him. It is that sort of tone, where “You’re brave. You’re marvellous”. People do not realise that they are being demeaning. I think that they genuinely think that they are being empathetic, sympathetic and kind, but, actually, you are constantly being knocked down and told that you have no value and no worth. That is what is of much greater concern to me.

The noble Lord, Lord McColl, mentioned Oregon. In 1994, the Oregon medical assistance programme cut funding to 167 out of 700 health services. Four years later, assisted suicide started being referred to as a “treatment”. On the back of that, funding was cut to 150 services for disabled people. They started limiting funded doses of powerful pain medication and put barriers in the way of funding for antidepressants. Thank goodness we do not have an insurance system like the one they have in the United States. I would be dead because my parents could not afford to keep me alive. For me, the big issue is not the doctor saying that your life is not worth living; it is the arm around the shoulder. It is that constantly being told, “You’d be better off dead”. That is what disabled people face every single day. Disability hate crime figures are the worst they have ever been in 10 years of reporting. It is constant. There is not a group of disabled people and a group of terminally ill people; there is a huge crossover.

I am sure that many people have noticed that my noble friend Lady Campbell of Surbiton is not here today. She has a chest infection. She is watching at home on her ventilator. We all know what a chest infection does for her prognosis. It immediately switches her from being okay to fitting in with the category of having less than six months to live. That is not a situation that I am very comfortable with.

[The Earl of Listowel (CB)]

My Lords, the noble Baroness spoke about the young man who was operated on misguidedly by the surgeon. It reminds me that young people, 18 to 25 year-olds, might be particularly susceptible to this kind of suggestion over time. I am concerned that this particular group, who are not at the end of their lives but at the beginning and who represent a very small group within the group that we are discussing today, should be given plenty of thought, in particular because of issues around their maturity and the trauma that they may have experienced growing up.

We recognise that developmental delay can arise from trauma. We recognise that, while 18 is generally considered the age of maturity, we extend protections up to the age of 25 for young people who are leaving care. That is for a number of reasons, but in part because of the history of trauma that they have experienced. We recognise that it may take more time for them to develop. Where children or young people have not built up such large social networks, they are more dependent on those nearest to them and one should be very careful to avoid a situation in which they are drip-fed the notion that perhaps their life is not worth living and should be curtailed.

Welfare Reform Bill

Debate between Baroness Grey-Thompson and Earl of Listowel

Wednesday 16th November 2011 Grand Committee

[The Earl of Listowel]

I suspected it might not be. For people with fluctuating conditions, where there is a likelihood of their going back on repeated occasions, perhaps one could sort out within a particular group individuals who would benefit from having regular contact with the same person. In the spirit of co-production, some individuals who are going to be assessed on a repeated basis may perhaps like to choose the person they deal with. However, as I say, I do not know how it works in practice at the moment so this may be by the by.

On listening to this debate, the question of the supervision which takes place in the social care arena seems to be pertinent. I am grateful to the Minister for making it possible for a social worker to visit the officials working on this and to discuss matters of supervision. In social care it is very important for front-line staff to receive quality supervision on a regular basis for three purposes: first, to check that they are doing the right job; secondly, to check that they are receiving the right continual professional development; and, thirdly, to ensure that they are not responding inappropriately to the clients.

On the third purpose, we all come to life with our experiences, and some assessors may find it difficult to work with particular clients who rub them up the wrong way. They need to be able to go to their supervisor and say, “Look, I feel really uncomfortable working with this person. I am not sure it is actually anything to do with them. Can you help me to sort this out?” They need a sounding board, if you like. That is one aspect.

On the continuing professional development side, this is a training aspect to check that they are continually building on their understanding of, let us say, autism. They will start from a point of ignorance but, in the course of years of experience, they will learn more and more. They are helped to do so and their supervisor ensures that they get the opportunities for that learning and enrichment. It is a draining job and the people doing it need to be recognised, supported and enriched. I have covered those three points but, as I say, I am not sure it is pertinent.

The proposal for a trial arrangement might allow an opportunity for us to find the most effective kind of supervision we can afford to provide and where there are opportunities to build continuity of relationship with clients.

I have an amendment later in the Bill which relates to how one manages the system and the culture in this area. If the people at the very top of some of these organisations had experience of social care—if one could be confident that there was a senior social worker at the top of the Jobcentre Plus arrangements, or whatever—they would have the necessary insight and the understanding to help people on the front line who will need a system of this kind to assist them in working with vulnerable adults. In that way, even with limited resources, the best outcomes could be achieved in the circumstances.

However, I will come to that amendment later. I look forward to the Minister’s reply.

[Baroness Grey-Thompson]

My Lords, I support the noble Baroness, Lady Campbell of Surbiton, and this amendment is also in my name. It is vital to ensure that the new framework is right, and this amendment gives me some comfort in what is a very difficult time for a huge number of disabled people. The noble Baroness, Lady Howe of Idlicote, mentioned time. That time is required.

If someone has a health condition that is likely to improve, or a newly acquired impairment to which they are likely to adapt, no one would argue that the costs might not change over time and that there should not be a reassessment. For example, the costs of someone who is a lower leg amputee will be very different in the first 18 months or two years after the amputation from what they may be 20 years later when they have adapted to it. However, when someone has a health condition or impairment that is unlikely to change and the costs are likely to remain the same, it does not make sense to keep sending them for more face-to-face assessments. For people in this situation it should be enough to confirm with the claimant’s healthcare professionals that their condition is unchanged. I feel very strongly about this because the following claimant told the MS Society how she feels about the prospect of face-to-face assessments. Many like her find this process very strange given that so much is known about the condition, including that it will only get worse and not better. When such claimants have to talk to a stranger about some very intimate details of their life it can have a devastating effect on them. The claimant said:

“I am already dreading the day when I have to sit in front of someone and explain myself to them … When I am already seeing a neurologist and a whole team of people who help me to try and live as best I can with MS … This is just not fair in my eyes. … Shame on the people who have come up with these changes which once again affect real people who have no choice but to try and live with this illness”.

Welfare Reform Bill

Debate between Baroness Grey-Thompson and Earl of Listowel

Tuesday 4th October 2011 Grand Committee

[The Earl of Listowel]

I hope that the Committee will forgive me; I omitted to declare my interest when I spoke about the work of National Grid Transco. I have received hospitality from them on a number of occasions and I have declared that.

[Baroness Grey-Thompson]

I was asked yesterday morning to come into this room and check for accessibility. I came in at 2.15 pm to check that there was enough room and we are fortunate that a huge amount of work had gone on to make sure that there was enough space for wheelchair users who might come to speak or to deal with various colleagues’ needs. On the point about voting, my personal view is that it is incredibly important that if I take part in a vote, I actually walk, or push, through the Lobby. As much as being able to see my name in a list, it is important to me that Members of your Lordships’ House see which way I push. If there is a Division—I hope not today—I will be going to vote and that is something important that we should all have the opportunity to do.

I know that not all my fellow Peers feel as strongly about walking down one of the Lobbies as I do, but it is very important in terms of democracy.

Academies Bill [HL]

Debate between Baroness Grey-Thompson and Earl of Listowel

Wednesday 7th July 2010 Lords Chamber

[Baroness Grey-Thompson]

My Lords, I support the amendments tabled by the noble Baroness, Lady Wilkins. The noble Baroness, Lady Campbell, wanted to speak in support of the amendment, but could not make the late hour for health reasons. I am therefore pleased to take her place, after taking her considerable briefing.

I share her concern about losing essential support for disabled children if we do not ensure that the Bill delivers an appropriate system to do the job. I am a member of the All Party Parliamentary Group on Disability, chaired by the noble Baroness, Lady Campbell. The group has frequently been told that too many disabled children are not getting the specialist support that they need at school fully to engage with the curriculum. I am concerned that the Bill may have the unintended consequence of worsening this problem. I will give an example. The National Deaf Children's Society identified a case in the West Midlands in which a small all-through school became an academy. It admitted a disabled child who required significant levels of support. However, the academy had difficulty in funding this support as it took up a disproportionate amount of its special educational needs budget. As a small school working with one deaf child, the academy was unable to access the economies of scale that would have made the support for this child affordable.

On a more positive note, I am pleased to hear about Waltham Forest local authority, which decided to adopt a different funding model when a delegated structure similar to that proposed in the Bill failed to support the needs of disabled children. Now, a local special school receives its funding to operate an outreach service for all other local schools free of charge.

The lesson from Waltham Forest demonstrates how important it is to think through the impact of any changes to funding, especially for support services, before proceeding. I believe that this amendment helps us to do that and to avoid unnecessary damage to the education of disabled children. I urge the Minister to respond positively to it.

[The Earl of Listowel]

My Lords, I rise briefly to support the amendment and apologise for not being present when the noble Baroness moved it. I know that, with his wife’s experience as a volunteer, the Minister is familiar with these issues. Recently I spoke to a teacher who had completed her first year working with teenagers with autism and she told me how exhausted she was. She had spent an outward bound weekend with them; they had been doing a school play the previous evening; and she had had to complete the school reports. She was utterly exhausted and told me how challenging these children could be. However, she said, “I love these children. It’s so satisfying to do this work”. We need to ensure that the professionals who work with these children get the best specialist support available. I share the concern raised by my noble friend Lord Low about the dangers of atomisation and fragmentation, and I know that the Minister will also very much bear that in mind. We all have to work in partnership if we are to achieve the best outcomes for these young people.