Andrew’s Story

“When I was first diagnosed I was so scared, but now I know that there are people and facilities out there that are going to help you, at any time of day or night, if you need it.”

“Up until about a year ago, I was a keen lawn bowler,” says Andrew, one of Phyllis Tuckwell’s Hospice Care at Home patients. I played for the Mytchett Bowling Club, which is just around the corner from me. I really enjoyed it and I did quite well, winning a few competitions. I don’t play any more though. After 18 months of decreasing mobility, an operation on my neck, and a replacement hip, I was finally diagnosed with Motor Neurone Disease in April 2020. My Neurology Consultant at Frimley Park Hospital referred me to the Acute Respiratory team, and they referred me to Phyllis Tuckwell.

After the diagnosis, our world went a bit awry. My family were absolutely brilliant, and we took each day as it came, but I was very anxious. I wasn’t sleeping well, I lost my appetite and I kept having panic attacks. It’s very hard to come to terms with, especially when you learn you’re going to be referred to a hospice.

The first person to contact us from Phyllis Tuckwell was Kay from the Community Team. She immediately put us at ease. That meeting was followed by a consultation with Dr Sarah. Because of the Coronavirus restrictions, we had an online video call, but that was fine with us. I work as a Finance Manager and for the last two years I’ve been based at home, so I’m well-used to video calls!

My diagnosis scared the life out of me. MND is different for everyone and I don’t have a definitive lifespan. You try to be positive, but you don’t know what’s going to happen, how it’s going to affect you. When you get that first call from a doctor at a hospice, you don’t know what to expect – but Dr Sarah’s calm and comfortable demeanour immediately put us at ease. She treated me with understanding and empathy. I didn’t really want to know all the details, but she spoke to Pauline, my wife, too, and told her more about the illness. You can be told as much or as little detail as you want to know.

Before Dr Sarah called, we felt totally alone. I had been diagnosed, but other than my consultant at Frimley Park Hospital, my GP, and Alison, who’s a specialist physio from the MND Association we were on our own. It was basically Pauline searching for help on her iPad. But by the end of the call we both felt so much more supported. One of the things about Phyllis Tuckwell is that everybody knows their colleagues’ specialties and can refer you on to them. That makes things so much easier for us, that people can point us in the right direction for us to get the best help, both within PTHC and externally. Since my first conversation with Dr Sarah, I’ve been referred on to several other departments within Phyllis Tuckwell, and ten different people have contacted me, all to help me with a different aspect of my care.

Liz, one of their Occupational Therapists, visited me to see what support she could give me. She’s provided me with some equipment to help me get in and out of bed more easily, taught me some anxiety management techniques, helped me to think ahead about what I might need as my condition changes, and arranged for a carer’s assessment, to see if we can get some additional care support. She also realised that we needed some emotional support too, and referred us to their Patient & Family Support team, for some counselling, which Pauline and I have found really helpful. Pauline has also had lots of detailed conversations with Dr Sarah and the Hospice Care at Home team, and I’ve been referred to Jenny, a Speech Therapist, who also came out to see me, and a Dietician too. Abby, one of Phyllis Tuckwell’s Physiotherapists, has been really helpful as well. I had a video call with her, to get some help with my walking. Up until a couple of weeks ago, I was still just about able to walk short distances using either walking sticks or a walker, but it was becoming more difficult and tiring. When Abby video called me, we talked about how I could keep using my arms and legs for as long as possible. Abby explained that we had to find the balance between maintaining what mobility I’ve got, but not overtiring my muscles. She assessed my mobility via the webcam and asked whether I had been referred to Frimley Park Hospital’s Orthotics department, for some orthotics. They’re ankle-type straps that go under your feet, to help you lift your feet up when you’re walking. I hadn’t been referred, so she referred me. She asked me my shoe size, and a couple of days later emailed me to say that she had managed to get me a designated orthotics contact at Frimley Park Hospital whom she had given my situation and measurements to, and that they would arrange for the orthotics to be delivered to me directly! The hospital had a bit of a backlog, due to Coronavirus, so Abby said she would do the follow up with me afterwards on a video call, to check that I can put them on and take them off ok, and that they’re helping me to walk more easily and safely. I was really pleased that we could do all this by video call. Because of my MND, I’m particularly vulnerable to Coronavirus, and logistically it’s very difficult for us to get to the hospital, so to be able to do it all by video call was fantastic.

Since the calls with Dr Sarah and all the other specialists, plus the support I’ve had from my local GP, who has been great, the combination of medication, counselling and input from people who know all about this illness has meant that I’m sleeping a lot better, I’ve regained my appetite and I’m managing my anxiety a lot better. They’ve explained my illness to me in such clear, understandable and reassuring ways. We know it’s not going to change the outcome, but it makes it a whole lot easier to cope with.

Alison, the specialist physiotherapist from the MNDA, also came to see us after my diagnosis, and brilliantly managed to get me a motorised wheelchair. With all the support I’ve received, I’ve now got the confidence to start using it, and I’ve realised how much it will help me.

We take each day as it comes, and Pauline has been an absolute rock throughout it all. We’ve been together for 20 years and married for 16. Within four days of my diagnosis, she had started looking into what building work we needed to do to make the house suitable for my needs. With help from my stepdaughter Melissa and family, we’ve moved bedrooms around, adapted the bathroom into a shower room and made sure the house can accommodate my wheelchair. We’ve also been overwhelmed by support from friends and bowlers, and my work colleagues at Catch22 who set up a Just Giving page to raise money to help fund our building works.

When I was first diagnosed I was so scared, but now I know that there are people and facilities out there that are going to help you, at any time of day or night, if you need it. Phyllis Tuckwell have been so fantastically supportive. They always deliver what they say they’re going to deliver, and with amazing promptness, especially with the current Coronavirus situation, and they always respect you as an individual. With their support, I can continue to be mobile and live as full a life as possible, for as long as I can.”