The Launch of the Report on Specialist Palliative Care

http://mndcampaigns.org/blog

At the APPG Reception

If you go to the blog page of the above site you will be able to read Julia Franklin's account of the reception held by the All Party Parliamentary Group on MND last Monday. The Report was launched on specialist palliative care for people with MND and this was formally presented to the Secretary of State for Health, Andrew Lansley. You may recall that Roch gave evidence before the APPG last year and so we were among those invited to attend the reception. It was the first time we ventured out to such an event with Roch in the wheelchair and we were both nervous about it but in practical terms, we encountered no difficulties. The reception was held at No. 1 Great George Street, just off Westminster Square - may I say, the perfect location if some of your attendees are wheelchair bound. On approach it looks inaccessible, having a flight of stone steps up to the entrance, but at the touch of a button these steps recede in turn to disappear into the wall, and are replaced by a lift platform. Very 'Potter-esque', to coin a phrase.

Roch at the APPG reception to launch the Report

It felt odd to be standing by his wheelchair. There were moments, listening to the speeches, when I almost felt there had to have been a mistake - this really shouldn't have anything to do with us - Roch and Deirdre. It felt slightly surreal at times.

Ashley Morgan's speech was very moving. She was diagnosed with MND eight years ago and as Julia says, is a powerful advocate and an inspiring speaker. At times it was not easy to hear. It is not easy to hear people talk about palliative care and end of life issues when they concern your husband directly. Not easy for her to talk of these things, as they affect her directly, too.

One thing I will take away with me was how she spoke of her reaction to the diagnosis. She told us how she had wished she had been one of those people in whom the disease progresses at speed - so it would all be over soon. But now she is grateful for the time she has been given, she is living with MND, not dying of it. I can't help remembering how Chris Woodhead said much the same thing when we heard him speak at an MNDA reception at the House of Commons and how he spoke of being surprised by his feeling of contentment, sitting in his wheelchair in his garden in the sun. Ashley spoke of MND as a gift which makes her treasure life more so that she makes the most of every moment. But there will come a time when it will become not about living with MND but dying of it and it is a frightening prospect, especially when we know that end of life care varies wildly amongst Primary Care Trusts. We've all heard the horror stories, medical staff with no knowledge of the disease, no expertise or understanding. The dying patient suffers and carers are rendered powerless because they are not listened to. Ironically, in most cases, the carer knows more about the disease as it affects their loved one than the nursing staff who attend them.

So although it was incredibly moving to hear Ashley speak of how she has conquered the limitations of MND to live as full a life as possible, I think she spoke most powerfully when she spoke of the limitations of the services provided at end of life and how important it is to ensure that when the end does come she can face it with dignity, without suffering and, if possible, at home, surrounded by those who love her. It's what we wish for all of our loved ones who live with the disease. It's what we would wish for ourselves, isn't it? So that was why we were all there - to raise awareness of the issues around end of life and palliative care because we need to ensure better palliative and end of life care for all people with MND and their families.

We need to lobby our MPs to sign Early Day Motion EDM 1943 to support this cause, and ask them to write to their local Primary Care Trusts to find out about availablity and quality of services at a local level.

Please click on the link above and read Julia's account of the reception. Is there anything you can do to raise awareness of the issues? You can follow the link at the end of her blog account to email your MP and find out more about joining the MND Association's campaign.

If you'd like to read the report, click the link below (see if you can spot the input from 'R, 48, London').

http://http//www.mndcampaigns.org/assets/0002/8370/APPG_Report_final_3_.pdf

Loving Kindness

I've been thinking lately about what helps me as a carer. It's a subject I revisit with my counsellor frequently. What can I do to help me survive? Because it is a battle for survival. What strategies can we come up with to get me through this, to keep up my physical and emotional strength - because believe me, there are times when I seriously question my ability to carry this thing through.

Well, for me the first clue to survival is in the second sentence above. I talk to my counsellor about it. This is a subject that came up in conversation at the last Branch meeting. I was talking to the wife of a person with MND, who explained that their GP was quite willing to refer her husband to a counsellor but told her that until she reached some kind of crisis point, this service would not be available to her. Back in August 2009, my GP helpfully referred me to a counsellor at my request (I broke down in her office so that probably helped) and I did get an appointment for an assessment about a month later. I attended this and was told they would get back to me within a few weeks. About six weeks later, I called them and a very rude woman told me to wait my turn "We haven't allocated a counsellor yet". At which point, I thanked her politely and immediately decided never to darken their doorstep again. (I can be pretty determined). I was lucky. A few weeks later, a colleague recommended a private counsellor and I have been seeing her ever since. I appreciate that not everyone could do this. At present I have the means to continue my sessions. I don't go every week but I go fairly regularly and I know she's there if I need her. I am tremendously grateful because I believe for someone in my position, it is essential.

It's not good enough that people are told 'Come back when you are in crisis'. From the moment of the diagnosis I believe that the grieving process begins. You grieve for the life you thought you had together, for the loss of all the plans you had made. From that moment you live in the shadow of the loss to come, and you carry a burden of sadness everywhere. I went to my counsellor full of fear and sadness and I am still afraid, and I am still sad but she helps me to deal with my feelings so that I can continue to care for Roch and deal with the changes, and make sure Kate and Tom are okay and still go to work and take on more and more of the household tasks and responsibilities - and not explode.

But we also talk about strategies for coping - ways to stay strong and I find this immensely helpful.
She would really like me to meditate more, and I have been trying - I think if I could commit to this, it would really help. I don't know about other carers, but my mind never stops. I operate at a constant level of anxiety (my anxiety levels have always been high, even as a child) and my head buzzes with thoughts, worries, 'to-do' lists, 'not done' lists. Twenty minutes of meditation, quieting the constant inner voice would be the perfect antidote. I find it difficult, but I am convinced it would help and I will persist. It's not a habit learned easily.

As a person forever on the go, I have learned to stop. I love to lie on our old tatty green sofa in the kitchen, facing the open doorway, where I can see and smell our lovely garden, now badly in need of cutting back (see, there I go - 'to-do' list starting already). I give myself twenty minutes there sometimes - occasionally I doze, which is not a bad thing. Often the cat joins me and I find his presence oddly comforting. I am learning to take my ease when I can. I have to. This is hard for me. I have had to learn to give myself permission to be good to myself.

My counsellor has given me a mantra - 'Loving Kindness'. Don't be hard on yourself, she says. Be good to yourself. Believe that you deserve it. Accept help when it is offered. I am getting better at this. Help from neighbours, support from friends - I have never been good at it. I want to be able to do it all by myself but I just can't. I won't be able to survive if I do. So now I must learn to ask for help and accept help that is offered.

I've mentioned recent contact with Richmond Carers. I can see that this will become more useful as time goes on. I mean to make use of them! I think at the start I couldn't see myself wanting contact with other carers, but I was surprised at how much it helped me when I met with other carers recently.

It helps enormously to have some kind of interest, something just for me. I have rediscovered my writing. I have created a space of my own in our old bedroom and here I can scribble and muse and ponder and try to create. It doesn't matter what I write or whether it's any good or not. But it's just for me. When I'm involved in writing something, I get a little bit obsessed with it - so I'm cooking or washing or pegging the clothes on the line, but in my head I've got some character acting out a part. Would she do that? I ask myself or I must do a bit of research about that, I think and I dash to a notebook and jot something down. Then I go back to my task. I really don't think about anything else until I think it's done - it's never done to my satisfaction, but I reach a point where further fiddling just ruins it. To have something for yourself makes a big difference, I find. I joined a creative writing class and try to cycle there once a week. It's fun and for those two hours I really don't think about anything else.

That's another thing - cycling. Exercise. I've never been very good at it but if I'm going to get through this I've got to make some attempt to keep fit. Hence my beautiful bicycle, Betsy.

I recently decided to take my health in hand, and went to my doctor, to register as a Carer and to talk about how tired I felt and to get some checks done. She was really sympathetic and helpful and we agreed that I seem to be doing all the right things. The results of the blood tests are back (lipids are up - low fat diet recommended) but everything else is normal. I have to stay healthy, otherwise I won't be able to look after anyone.

I have good days and bad days. Sometimes I think I'm doing okay and feel I can cope. Other times I feel lost. This morning I felt a bit like that - I wrote in my private journal about feeling sad and panicky - I wrote that I felt grief-stricken. Then I reminded myself that 'the worst hasn't happened yet', and I dried my eyes and made one of my lists. It always helps me to get something done. The first item on my list was 'Blog' and so I did.

A visit to the Royal Brompton

It's an anniversary today. Two years now since the diagnosis. That's pretty good. It's reason enough to celebrate. He's just beginning to need the wheelchair, he's still working, still able to enjoy food and drink. We're lucky I guess. I had a look at my post of a year ago. Roch was using the two sticks, and getting used to the rollator. It was just before our Venice trip. There's no doubt that the monkey is getting stronger but we're not done yet, not by a long shot.

Tuesday saw our first visit to the Royal Brompton and Harefield Hospital. One of the Neurologists at the West Middlesex referred Roch there for baseline assessment of his breathing capability. On arrival, we had some difficulty locating the disabled spots. Roch had booked one in advance as advised. When we eventually found them, we were dismayed by the very narrow side street in which they were situated. It looked so unlikely that we weren't sure we were in the right place. But no, we had arrived and I duly secured our parking permit from the 'Transport' office, having been directed there by a rather dour receptionist. Back out to the car and organised the wheelchair - very narrow pathway round the corner to the ramped entrance (our Richmond Occupational Therapist would never have approved the gradient!).

We were bound for Lind Ward on the fourth floor. When we got there it was very busy and the corridor (where most people were waiting to be seen) was pretty full. I really had no idea what to expect and at first it felt very alien and depressing. We didn't have to wait for long, however, before a nurse called us into the ward and there they did the breathing tests. Two nurses applauded Roch's efforts as he blew twice into a tube and the results of his lung capacity were recorded on a graph. Then we were sent off to wait for a blood test, after which, we were told, the consultant would see him.
So we went back to the corridor to wait. The afternoon did have its lighter moments, I have to admit. You meet people in a hospital waiting area. Yesterday we met 'Nanny Biscuit'. That's what her grandchildren call her. I think she's what's called 'a bit of a character' and she likes to talk. We encountered Nanny in the corridor about midway through our visit and would you believe it, we three were the last members of the public in the department! If a kindly nurse going off duty hadn't patiently held the lift door open for us as as we gingerly edged our way away, we'd still be there, listening to Nanny Biscuit!

Roch had been given the option of having blood taken from either his wrist or his ear. He didn't fancy the idea of being bled from his ear, so he said wrist but we had been waiting a while when the consultant appeared and explained that there would be someone available sooner to take it from the ear. So from the ear it was. Ger, my lovely sister-in-law has since explained that they needed arterial blood to measure the oxygen levels and she also said that it's really painful when taken from the wrist.
By the time we were called for blood to be done, Roch was the very last patient to be seen. But in a way, this made it easier. The department was almost deserted, the staff were delighted because they were nearly at the end of what must have been a very long (and I suspect very trying) day and it made it so much simpler to negotiate the corridor with the wheelchair. A very cheery male nurse smeared some cream on the ear (advising us that this was to bring the blood to the surface and not to dull the pain) and then, using a small razor, made a slit in the ear lobe (ouch!). Then he expertly directed the ever-increasing droplets into a thin tube. Roch then had a HUGE bandage attached to said earlobe with an enormous blue plastic clip. Oxygen levels slightly below normal but nothing to worry about and carbon dioxide levels are normal.

We were then brought straight in to see the Consultant, Professor Polkey and here we hit pay-dirt, as they say. This is a man we can deal with. He knows what he's talking about and is not afraid to address end of life issues with us. He welcomed us, explaining that he would be with us on the path ahead. We were reassured by his obvious experience and expertise. He was matter of fact about what lies ahead and made it easy for us to talk about a very difficult subject. This is the man who will monitor Roch's breathing capability and assist when it becomes compromised. Much of our conversation was around how much assistance Roch might welcome and his honesty and direct approach was actually very comforting. Roch and I will go back in two months' time so that they can conduct a 'sleep study' to see if his breathing is being affected while he is sleeping. The graphs show that his lung capacity is actually still pretty good, which is reassuring.

Again, we have been lucky. Those of you who have been with us from the beginning may recall posts in which I speak highly of Professor Al-Chalabi, our Consultant Neurologist at King's College Hospital. Professor Polkey now joins him in our personal gallery of Consultants We Trust. It's important to have people you can put your faith in. These are the people who strangely enough, give us comfort. The people who offer some hope that the certain end of the uncertain path which lies ahead may yet be reached with dignity and respect and the absolute minimum of discomfort and suffering.

I forgive you, Royal Brompton, for your poxy parking space, your crowded corridor and your dour receptionist. Meeting Professor Polkey made up for it all.

Reflections after Sunday's Branch meeting

It's been a long day. Early shift at work and my - was it busy. 7.30am-1.45pm straight, lots of calls, lots of stuff coming in - then a short lunch break to leave at 3.00pm, so that I could go with Roch to the local MND Branch meeting (West London and Middlesex Branch). We were late so the presentation by Nicola (physiotherapist of Ealing ENable Team http://ltc.ealingenable.co.uk/ ) had begun by the time I wheeled him in. First time he arrived on wheels. Last meeting he had the rollator so got in under his own steam.


Now I'm beginning to recognise faces. Today there were some new faces (not least of all the one small, very new face of our Branch Contact's adorable new baby, K - his first branch meeting).


Meeting a new patient and his wife has made me reflect on where we are now, made me think about my first meeting and how far we've come since then. I think there's an element of surprise for some people when they ask when Roch was diagnosed, because it's almost two years now, and he's still looking good. So many people have lost their loved ones so quickly, the illness can progress so fast that there isn't enough time to adjust to each change before the next is upon them. This is why it's not good enough when services are not joined up, or not efficient enough, when calls are not returned and equipment not provided on time. It's not good enough if a carer has to say - "Too late now, we don't need that any more, that time is past and we've had to do without. Now we need something else." It's good to know the Branch can help when people have problems like that. But we've been lucky, we haven't (so far) been ambushed by change and one thing the monkey has done is given us time to plan.


Meeting new members I see their courage, their anger, their fear. I recognise it - I would never say I know what they're going through, because of course I don't, everyone is different, every situation is different, but with a sorrowful pang (for them and for us) I recognise us in them. We are the ones that bit further along the road now, we're not the newbies any more. In a way I'm glad we're not the new kids on the block but I'm also sad because these last two years have passed quickly. We've managed to keep things fairly normal, we've travelled a bit, we've made the adjustments to the house. We've done well and we've been lucky. It's been possible to keep things fairly normal because changes have been gradual. But it's over now and the road is beginning to get rockier.


I looked at Roch at the meeting today and asked myself, what has changed for us? In fact, so much has changed. There's been a gradual shift within our relationship as he has become more dependent on me. He was usually the one who took charge, did the leg work, looked after me - although I flatter myself that there was a bit of 'the power behind the throne' going on! Physically he was always stronger than me, fatigue was me having to rest whilst Roch took over, never the other way around. He was happy for it to be like that. Roch was always on the move, seeking tasks, filled with a restless energy. Now I must be the 'doer'. Roch worries about that, because I do get tired. He told me recently that two years ago he was afraid I wouldn't be able to cope (which, by the way, thanks for that!) and is proud of the way I have managed. But it does affect the way he views himself. It's hard for him because he feels less in control. He's clinging on to every vestige of independence left to him (and he is not helpless yet) but we can both feel it slipping away.


Back from the meeting I had time to prepare a meal for the three of us and then drove Roch to the local pub through the pouring rain to meet a good friend for a few pints. Then back again two hours later to pick him up. I was worried about him making his way from the door to the car in the rain (he was using his sticks) and Tom came with me, to be at his side on the way out. In the past he would have walked home, rain or no rain. Now he has to ask me to bring him and collect him and be grateful he can go at all.

So - home again and it's been a long day. Off to Exeter tomorrow to bring Kate home for the summer.