Saturday 3 September 2011

Marie Curie Hospice, Hampstead

This blog is one that I've wanted to write for several years. I was finally inspired to do it by photographer, Harry Borden. We met when he took my photo for an article in the Sunday Observer magazine.

My son, Eric, and I.
Harry kindly offered to take more photos, and recently came to the hospice with me. I'm extremely grateful to him for taking these photos and finally bringing my blog to life. It's my hope that some people will benefit from it.

The Marie Curie Hospice in Hampstead has, without a doubt, vastly improved my quality of life with MND. When I was diagnosed in April 2000, my neurologist gave me a leaflet about the MND Association. I was too frightened to phone. When I finally summoned up the courage on a Friday afternoon, there was only an answer machine. I didn't leave a message. Now there is MND Connect to help.

I was blundering around, becoming progressively weaker, without any support. My GP had told me that I probably wouldn't live to see my children grow up. The therapist at her surgery said that she couldn't help me, but could offer me a shoulder to cry on. I decided to cry on my own shoulder. Eventually, a friend contacted the MND Association, because I was really struggling.

I was given an association visitor and she told me about the hospice. I was only 34 and couldn't imagine hanging out at a hospice. I told her that I wasn't interested. Luckily, fate seemed to intervene. I had become painfully thin, couldn't sleep and was very depressed. My brother made an appointment for me to see a doctor at the hospice. I was too weak to protest.

The doctor was extremely kind and understanding. She suggested that I start attending their day therapy unit, to use the gym and have some massage. I agreed, and before long the hospice became part of my weekly routine. I started to see the Medical Director, Dr Adrian Tookman. He provided the medical support that I desperately needed. Having worked with terminally ill people for a long time, he seemed to understand how I felt. I was comforted for the first time since diagnosis. Unfortunately, I couldn't see him when Harry came with me, but this is an old photo of us together.

Adrian helped me through a nasty divorce, to manage the changes that MND forced on me, and treated my depression. I wonder if I'd still be alive, if not for him. Adrian's my hero! I have to mention a nurse who works with Adrian, called Aisyah Scott. I've had poor service from my district nurses, but Aisyah has gone out of her way to help me. She's more like a friend to me now, which is very reassuring. MND terrified me at first, but I no longer fear it. I'm sure that is because of the support I've received at the hospice. 

So, I've given you the background. Now I want to use Harry's photos to bring the story up to date.

I attend the hospice twice a week with my carer, Karen (left). This is the receptionist, Josie, with Bob, the new hospice dog. Just being greeted by Bob is a real tonic and brightens up my day.

I try to use the motomed bike for at least 25 minutes, to keep my legs strong. It's probably the most popular piece of equipment in the gym, so in great demand. I hope they'll have the funds to buy another motomed soon. The gym is fairly small, so finding space might also be a problem. The hospice only receives some government funding, so relies on fundraising and donations from generous individuals, organisations and income from their shops.

One of the physiotherapists, Jill Pemberton, moving my legs and hips. I've been experiencing hip pain recently, so these exercises are really helping to keep my joints mobilised. All of the physios are very experienced and I can trust them. It's pretty disconcerting when your body starts moving in a totally different way. They help me to manage these changes and also recommend useful equipment.

Several complimentary therapies are available at the hospice. I could never afford them privately, so I'm very grateful to have had the opportunity to try them. I often used the hydrotherapy pool at first. It's so wonderful to feel weightless in warm water, when every movement on the ground is such an effort. I've also had reflexology, tried homeopathy and more recently, hypnotherapy. I was quite ill last year and also depressed. Sometimes, living with MND can make me feel hopeless. Hypnotherapist, Paul Byrne, (below) helped me through that. He's patient and helps me find ways to cope with problems that crop up. Sometimes, it's just enough to have the space to forget about worries at home. Paul's also very funny and it's good to have someone to laugh with.

The hospice also offers respite and I've spent some time as an inpatient there. The staff are good and caring, although very busy. I'm glad to know that I have somewhere to go if I'm ill. I find hospitals frightening, especially since my speech is so badly impaired. There are no specialist centres for MND sufferers, so hospices really do offer us a very important service. I think that many people believe that hospices only help cancer sufferers, but they do a great deal to help patients with MND too. End of life care is also important when you have a terminal illness. It's good to know that I'll be able to pass away with dignity and peace (I hope!)

This is my friend, Alicia, whom I met recently at the hospice. Alicia has MND and can no longer drive. Hospice transport brings her to the day therapy unit twice a week. MND can make you feel very isolated, but the hospice provides an opportunity to get out and meet people. There are also several volunteers kindly helping out, so you're guaranteed to see a friendly face.

Alicia, Eric and I, in the beautiful hospice garden. 

In conclusion, I can't imagine my life without the hospice. The staff help me to stay positive about my situation and are generally kind and sensitive. I've made many friends there. Unfortunately, some have lost their battle with cancer and MND, but I feel lucky to have known them. We are seeing cuts in services everywhere and everything is more expensive. I hope that some of you will help to support your local hospice.

I'm hoping to get a team together to volunteer at my hospice for Mitzvah Day 2011.

I ♥ My Hospice!


  1. What a wonderful post ! My brother has stayed in our local hospice for a bit of respite care a couple of times now-it is a wonderful place -I can`t praise the staff enough . He use to go on a regular basis for physiotherapy but due to lack of funding this was stopped-these places are an invaluable source of help and support.

  2. know exactly what you are going through my mum has this horrible disease she is currently in our local hospice for respite my mum just got diagnosed in january this year she is 58 and has the progressive 1 and its very heartbreaking having to watch your loved 1 going through this my mum keeps taking infections every few weeks which is very frightening every time this happens but she is a fighter and by the sound of it so are you hope manage to stay strong and fight this disease how much as you can this is a great blog you have done and a will certainly be visiting it lots more please take care luv dorothy xxxx

  3. Hey Sarah! My name is Judy Glenn. I live in the States. My mom passed away from ALS(as we call it here) in 2004. I admire your great attitude as my mom had as well. I am just reaching out to people affected with ALS (MND) because I have gained a passion for them. I have also written a blog. My blog stems from a book I am trying to get published about my mom's encounter with ALS. God bless!

  4. sarah, you are such an inspirational woman. My family watched my aunt go through this terrible disease. Aunt Nancy was an amazing person and dealt with MND with dignity, bravery AND humour x My wish is that they find a cure for all terminal diseases so that special people dont have to go through so much pain and heartache. xxxx sally

  5. Hi Sarah, since I became ill you've popped up in a lot of places, a proper Field Marshal in the battle with MND. And yet here you, still fighting the daily battles against MND. I admire your tenacity, stoicism and courage in facing this every day and derive great comfort from your example.

  6. As always Sarah you have the ability to communicate at a very personal and human level, showing compassion and humour in equal measure. By opening up your life to so many others you help break down the barriers that stop people from seeking the help and support they so desperatley need.

    Thank you for your kindness and inspiration over the last few months.


  7. Hi Sarah, just wanted to say what a brilliant blog!! Also, thank you for highlighting the fantastic work of the Hospice- they truly provide a source of strength and support for so many people.
    Take Care Sarah

  8. fantastic blog, wonderful place, brilliant people and amazing Sarah!

  9. So lovely to see you happy Sarah.

    Take care.

    Michael Westwell

  10. Its a shame that the NHS don't give more funding to our local hospices. The support and care they provide is invaluable to both patients and carers. I found the hospice staff we had when my mum was ill an absolute godsend. They not only gave mum the best care possible, but were there for us also, giving us the emmotional support we needed, even after she had passed away.
    Your in the good hands. Take care & God bless

  11. Hello Sarah – great blog! Delighted that you have found such a wonderful hospice and so many lovable friends. It's great to read about you and get to know the wonderful inspiring person that you are. I am delighted that I have been in contact with you by e-mail. Now I know the person behind those e-mails. He well my friend, we are all in this together no matter where we come from – brothers and sisters in that fight for survival! Go well my friend: Andy.

  12. Sarah, your my inspiration to keeping going, i love reading all about your life events and only hope that i get to do so many things in the future.
    My hospice is St Christophers here in south east London and i am making good use of their help and support plus my kids love the fish in the garden, they really doi take great care of us all there, i only hope that when i do get funding etc that they dont cut them out for me as i really am in need of real proper support now,
    Sarah i see how dedicated you are to helping others as well as yourself and i follow your events in life very closely .

    John xxx

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