In New York

In New York

Tuesday, 11 June 2013

Dignity in Dying

Last week we had a meeting with two people from Dignity in Dying

We met with their Senior Policy Advisor Davina Hehir and Press and Campaigns Manager Jo Cartwright.   Roch had made contact with their organisation, expressing an interest in becoming actively involved in their campaign for a change to the law around assisted dying in the UK. Both Roch and I are aware that this is a divisive issue and that feelings run high. However, I believe that a lot of the objections to changing the law are based on a lack of information about and understanding of the proposed changes and a very understandable reaction to scaremongering in the tabloids.

So, why does this organisation exist? Here I quote from the Dignity in Dying website, where they answer that question themselves:

“Why are we here?

We believe that high-quality end-of-life care should be complemented by the choice of an assisted death for terminally ill, mentally competent adults who meet strict safeguards and feel their suffering has become unbearable.

Without a change in the law, terminally ill people will suffer against their wishes at the end of life and will continue to make decisions without the advice of medical or social care professionals.

Those who can afford to will travel abroad for an assisted death, others will attempt suicide behind closed doors, some will refuse food and water to bring about their death, and far too many will ask family members and loved ones to help them die. All will be denied the choice of safe assisted death, in their own home, at a time of their choosing.

None of these options offer open and honest conversations with health and social care professionals and the only deterrent against abuse is the threat of prosecution after somebody has died. Assisted dying legislation would introduce up-front safeguards to check for abuse and coercion before somebody dies. In short, we want greater choice and greater protection for people at the end of life.”

Let me state here that Roch does not wish to die just yet and has no plans either to take his own life, or to request assistance to do so. But he would like to think that when the time comes, he might have a choice about how, when and where he dies and so he intends to get involved in the campaign to change the law to allow assisted dying (within the proposed strict safeguards) for terminally ill adults, who have the mental capacity to make such a choice. It is unlikely that the law will be changed in time for Roch to avail of it, should he wish to do so, but he hopes to be part of the movement for change for the benefit of others. 
I include a link to the Consultation document produced by the All Party Parliamentary Group on Choice at the End of Life, in partnership with Dignity in Dying. This sets out clearly both the present law, the proposed changes and reasons for the proposed changes, and the draft Bill. I can do no better than to refer you to this and ask that you read it before you make up your mind about the issue.

On 15th May this year, Lord Falconer’s Assisted Dying Bill was introduced to the House of Lords. This is only the first step in the Parliamentary process.  At this stage, there is no debate. The long title of the Bill (indicating its content) is read out by the Member of the Lords in charge of the Bill. After this formal introduction, the Bill is printed. The next stage will be the Second Reading, which is the first opportunity for Members of the Lords to debate the main principles and purpose of the Bill.

As for Roch – don’t be surprised if you see an interview with him in one of the newspapers or hear him on radio – perhaps even TV. He intends to work closely with the Press and Campaigns Office at Dignity, to tell his story and explain why he wants to get involved.



Friday, 7 June 2013

Roch The Outlier

We had what I think of as ‘the biggie’ the week following The Brompton visit – his appointment with Professor Al-Chalabi at King’s College Hospital. For the second time, friend Gerry took time off work to drive us there. I really can’t put into words what an enormous help this is. It means I can relax and concentrate on the matter in hand and I’m not completely shattered by the time I get Roch home. Roch has the pleasure of spending time with one of his best pals on what can be a stressful day. Gerry is  very good company and I hope I’m right in saying that we all enjoy the journey there – and back again.  As we don’t have the WAV yet, someone has to accompany us, as I can no longer get Roch in or out of the Berlingo by myself. Gerry’s pragmatic approach and willingness to listen to Roch’s instructions make him an ideal companion and helper. The old manual wheelchair came into its own again. Man that ramp is steep! The days when Roch could get in and out of that wheelchair unaided are gone, fading into memory.  Anyway, not to dwell on that – when we arrived at the Neurology clinic I was disappointed to see that Professor Al-Chalabi’s name was not on the board. In fact, I later learned that he was attending the ENCALS (European Network for the Cure of ALS) meeting in Sheffield so I think we can let him off.

Professor Shaw did the honours. We have seen him once before and he makes a satisfactory substitute. Both are expert, professional and direct in their approach. Perhaps Professor Al-Chalabi’s manner suits me better. It’s hard to explain. He seems interested in an animated way – as if he might learn something new himself from Roch. It’s not that he gives me reason to hope but somehow I always feel more positive afterwards.  

Professor Shaw asked Roch if he objected to the presence of two students for the consultation. Roch never has any objections to this, as students have to learn I guess.  So we had two onlookers for the duration of the proceedings. Professor Shaw gave us a goodly piece of his time and was very willing to answer any questions. There really is very little they can do but answer questions and monitor his condition, which the Professor did with interest, given the slow progression of Roch’s ALS/MND, calling him an ‘Outlier’ meaning I suppose that he falls outside even the limits of their non-too predictable parameters,  making prognosis even less certain than with other, more ‘typical’ cases.   Roch again asked the burning question “Am I likely to die still able to speak?”   He had asked Professor Al-Chalabi the same question last time. Professor Shaw was perhaps more clinical in his response. “No,” he said, “Statistically, 95% of patients die having lost the ability to speak. But then, you are an outlier.”
Roch talked about the recent shoulder pain and resulting problems with transfers and he referred us to the physiotherapy team at King’s. We saw a physio there afterwards (more anon).

At the end of the consultation, he turned to me and asked me how I was. Even our hero Professor Al-Chalabi doesn’t do that. Admittedly I would have found it difficult to confess to a lowness of spirit or discuss anti-depressant medication in front of the student audience but it was nice that he asked. I was honest enough to say “It’s very hard.” After that, he asked if I still worked and I told him yes, and a little about the job, which effectively headed off any further probing. Sometimes, I don’t know how I am.

I’m not sure any more if that one is ‘the biggie’. I’m beginning to think that the Respiratory appointments at the Brompton loom larger and will be of more significance in the coming years. The next appointment at King’s will be in December, two weeks before Christmas oh my!

We see the physiotherapist

After taking our leave of Professor Shaw, we headed off to Physiotherapy. Roch has never had a great deal of time for physiotherapy in the context of Motor Neurone Disease, although he is always grateful for the efforts of the physios from Richmond Neuro Rehab. He’s pretty cynical about how much real help physiotherapy can be.  In all fairness, some of the most useful aids have come from them, such as the ‘foot-ups’ and the walking sticks and they give very sound advice about safe ways to stand and so on.

My first impression of the physio we saw at King’s was that she wasn’t listening closely enough. As the session progressed, I thought she became more focused. Her examination of Roch was gentle and seemed competent and there has been no discomfort resulting from her manipulations.  I explained to her that I was concerned about the way in which I was assisting Roch to get out of bed. With her in Roch’s place, I rather clumsily demonstrated my method and she agreed it was bad, for my back and his arm.  Because the bed rail is in the way, it’s really hard to assist him without pulling him up with his left arm.  She showed me the better way, which involves assistance at the trunk rather than the arm and advised that our local physio bring me through it again. This is a good idea, as the way she showed me didn’t take the position of the bed rail into consideration. So we will have to ask Amber to come up with a plan. Anyway, she advised that Roch continue on the anti-inflammatories prescribed by the GP as she said the inflammation in the right shoulder had not gone away.

The disappointing thing is that when we received our copy letter, the original of which went to the GP and Richmond Neuro Rehab, there were several inaccuracies – which proved that our first impression had been correct and she hadn’t been listening properly.  I suppose it doesn’t help my impression of her that I come across as a bit of a dimwit pulling at his left arm (she states that Roch reports ‘severe pain’ in the left shoulder. No, actually, the pain is in the right shoulder and that’s why we came to see you in the first place). Heigh ho. But yes, I do get that pulling at his arm is bad. Yes. Thank you.



Thursday, 6 June 2013

Royal Brompton visit

On Tuesday 21st May, we headed off to the Royal Brompton, for Roch’s outpatient appointment at the Sleep and Ventilation Unit, on Lind Ward. The usual tests were carried out. Blood was taken from the poor ear (it always takes so long for the bleeding to stop!) It has to be arterial blood, so they take from the wrist or ear. The test is in order to monitor the gases in the blood, so oxygen and carbon dioxide levels are checked. This visit oxygen levels were found to be normal. His fvc (forced vital capacity) is down since his last test at the end of January and reads now at 77%, and although this isn’t a bad reading, it does show an increase in the rate of decline. 

Poor ear is assaulted again
We were delighted that the tests were carried out quickly, really almost immediately after our arrival. Unfortunately we then sat and watched as every other patient was called in before Roch. We were the very last in Clinic. Even the receptionists had gone home by the time we were seen by the doctor.  It’s not something we would ever make a fuss about – it’s just the luck of the draw. But somehow waiting around for hours, doing nothing, turns out to be really tiring. 

We didn’t have the privilege of seeing Professor Polkey this time but it hardly mattered. The doctor who spoke to us and gave us the test results was, again, someone who listened attentively and gave her undivided and unhurried attention to us both. As usual, we were impressed by the expertise and professionalism shown by the medical staff there.  Next appointment in 6 months’ time. Meanwhile, use the nippy if he develops morning headaches, daytime somnolence or breathing difficulties when lying flat. He’s happy with this.
There’s no doubt, his voice does get weaker and more tired at times and I wondered if it was because his breathing is being affected.  She explained to us that of course, the larynx is a muscle too, so this will begin to weaken and may have begun to lose strength already. As for his breathing, it is slightly affected and so he does become a little short of breath on occasion – but there are no bulbar symptoms as yet. So that’s good news. 

There was no sign of 'Nanny Biscuit'. (blog passim 16.06.11)

Mandy sorts the wheelchair woes

I have some catching up to do to bring you all up to date.

First of all and for the record let me state that Mandy Garnett, the Branch Contact at the MNDA West London and Middlesex Branch is a wonder. Roch and I just had to admit defeat as regards the elusive riser/recliner chair and the new wheelchair.  There was no sign of either. We rather naively thought we could deal with the delays ourselves. Over the last bank holiday weekend we gave up – earlier in the week our OT had copied me into an email thread with a rep at Wilcare Wales, in which she told him that it was now becoming embarrassing  for her as the client’s wife (me!) was in touch with her every day. In his reply he promised he would look into it, and a week later we still had no recliner chair.  The OT agreed with me – it was time to let Mandy sort them out. The ‘new’ wheelchair had been taken away by Serco (again) but there was a deafening silence there, too.  As I was tired of pointing out to people, it meant that Roch had nowhere to sit in the house except in his old electric chair, not ideal to sit in all day long. It has no tilt forward to help him stand up or tilt backward so that he could lie back with his feet up to help their circulation and give him a chance to relax – no headrest either.

Well, thanks to Mandy, within two days we had the recliner and wow what a difference it makes! Roch can now sit comfortably in a proper chair, has actually been known to doze off in it, and with his feet up again, the awful frozen feet syndrome is lessened. Best of all, it can raise him up almost to a standing position.
At last! The new riser/recliner arrives.
 Next she turned her attention to the wheelchair fiasco. Lo and behold, she discovered that the original chair had been returned stock. So why lumber Roch with a wheelchair that hadn’t worked for someone else? I am not clear about where this chair originated, or who gave the authorisation for it to be farmed out to an unsuspecting wheelchair user. This so called super -duper chair was delivered on Tuesday 9th April. Since then, Serco came to fix it in situ four times, took it away twice and it broke down on two occasions on the High Street and once in the back garden.
On Sunday 2nd June, following Mandy’s investigations, a new working chair with a head rest and tilt function was provided through the MND Association. 
People with MND can’t wait around for equipment. They just don’t have the time.  What is so difficult to understand about that?
More good news. We have a date for delivery for the new car and my replacement counterpart driving licence arrived today. So come 19th June, we are completely mobile again and no longer have to rely on taxis to get around. (Sounds of cheering and applause…)

Snooze time

Sunday, 2 June 2013

What I'm really thinking

Your greeting stops me in my tracks - “How are you - all right?”

What I say: “Yeah, fine – you?”

What I want to say:

"You’ve answered your own question, haven’t you? It’s not your fault. You want to hear that I’m all right and now I don’t want to disappoint you. Are you afraid I’ll ask for help? That I’ll start to cry and you won’t know how to comfort me? Or are you just in a hurry? It’s a sunny weekend morning and you have plans. Actually, no, I’m not all right. There’s a dead weight in the pit of my stomach and I had difficulty motivating myself to get out of bed this morning to face the day. My eyes ache and I’m feeling queasy. Last night we talked about his probable life expectancy and our financial situation, and did a bit of forward planning. He’s been in contact with ‘Dignity in Dying’ – he believes that there should be a choice when it comes to assisted dying. I agree. This morning he dropped his favourite espresso cup and it broke. “The beginning of the end,” he said. I bent to mop up the coffee, “Don’t be silly. Everyone drops things.”"  It’s not like me to give automatic false assurances.

All right, I can tell you I’m fine and you can go on your way. I can paint a smile on my face to go with the lie.

You’re a good person, and I like you, but next time you ask the question “How are you?” Just stop there and be prepared to listen to the answer. Maybe I’ll be feeling okay but if I’m not, I won’t expect you to do anything about it except listen.

I’d do the same for you.