“The first time I sensed something wasn’t quite right was in the autumn of 2016,” said Paul. “I’d had a few drinks with some mates in Guildford, and while I was being driven back home I realised I was slurring my speech quite badly. This is odd, I thought. I haven’t had that much to drink and normally I hold it pretty well. I didn’t think any more about it after that, but looking back that’s where it began.”
A few months later, Paul’s wife Jess, who is a doctor, began to suspect that something was wrong. Paul was slurring his words more noticeably, and had commented to Jess that he had started noticing a build-up of saliva in his mouth. Paul went to see his GP who sent him for tests, and a few weeks later they met to discuss the results. He told Paul that the diagnosis was Motor Neurone Disease (MND) and that his life expectancy was probably around two years.
“I left the hospital in a state of shock. I kept thinking why me, what have I done to deserve this?” That evening, Paul and Jess told their three children, David, Jo and Rosie, Paul’s diagnosis, and the next day met with his mum, and siblings Juliet, Andy and Sally, to tell them the news too.
“My GP had immediately referred me to the Beacon Centre to see how they may be able to help me,” said Paul. “At that point I had little idea of what a hospice was, other than a place to go to die. I was also still in some shock and confusion over my diagnosis.”
We provide our care from our Hospice in Farnham and Beacon Centre in Guildford, and our teams also visit patients in their own homes and care homes, providing holistic care wherever each individual patient prefers to be. Our Living Well service, which cares for patients who need some support managing everyday life with their illness, includes our nursing team, physiotherapists, occupational therapists, complementary therapists, dietitians, patient & family advisors, counsellors and pastoral care team. They visit patients at home, but also lead our two eight-week Living Well programmes – Living Well with Illness and the Creative programme – which are held at both the Hospice and Beacon Centre. The programmes comprise weekly two-hour long sessions, each focussing on a different topic, such as remaining active, food and nutrition, managing fatigue, and therapy through nature.
Paul was introduced to our services and offered a range of support appropriate to his needs. At first, the MND affected his speech and swallowing most. “When I was first diagnosed, apart from a bit of excess saliva and slightly slurred speech, I was incredibly fit and healthy.” Over time, it has started to affect him in other ways too. “By the summer of 2020, many of the things I’d been able to do during the previous three years were now impossible for me. I can now no longer speak at all. I walk incredibly slowly, in a jilted fashion, and fall over pretty regularly. I’m losing sensation in my fingers and my fine motor skills are deserting me.”
“The hospice care services were explained well. I took a great deal of comfort that I would be well looked after and have a lot of access to resources if I needed them. I did initially talk to a counsellor, but we concluded at the time that I didn’t need counselling services, as I have a positive and upbeat outlook and mindset. At the moment I’m thinking about living, rather than dying. I refuse to be defined by the prospect of using a wheelchair, wasting limbs and death creeping closer. When I received my diagnosis, one of the first things I did was to draw up a bucket list. Top of the list was to realise a long-held ambition to climb Mount Kilimanjaro, which I did with some close friends. Since then I have also had some amazing holidays with my family, and sung a duet on stage with an opera singer, in a project which highlighted the loss of voice that some illnesses can cause. When you’re diagnosed with a terminal illness, very few people know how to talk to you about the future or death, so I wrote a book and founded the Aura Circle online community, to open up the conversation and help encourage discussion about death, rather than shy away from it.”
“I know my disease is progressing, so it’s reassuring to know that Phyllis Tuckwell is there if I or any of my family need them.”
Lyn, our MND Clinical Specialist, is an MND practitioner for Guildford and Waverley. Because of the complexity of the disease, the number of healthcare professionals involved in an MND patient’s care can be overwhelming. Lyn works alongside people with MND and acts as a single point of contact for them, to both the team at Phyllis Tuckwell and also the wider team who support them in the community, such as speech and language therapists, dietitians, respiratory care teams, and MNDA care centres.
“It’s been so good having Lyn as the single point of contact for everything. It makes my life a lot easier. It can be quite confusing at times, with who I need to talk to,” said Paul. “I can keep in touch with Lyn by email and by her regular visits to my house. It works really well.”
One of the things that Lyn has helped Paul with is a cushion which helps him to get from sitting to standing, something he struggles with on his own. Paul had done some research and found a cushion that he could inflate and deflate as required. It is portable, meaning that he can use it on any chair, for example if going out to a restaurant. By inflating it while he is sitting on it, it will slowly assist Paul up into a standing position, enabling him to maintain his independence and mobility. Lyn worked together with Action for Carers Surrey and our occupational therapists at Phyllis Tuckwell, to get the cushion for him.
“The cushion has been a great success and I’m so grateful Phyllis Tuckwell were able to help with this. I am determined to be as independent as possible, for as long as possible, so this really helps, rather than me relying on someone else,” said Paul.
“I’m having a hydrotherapy session next week, to help with my leg stiffness, and I’m greatly looking forward to that. Lyn kindly put me in touch with them. I have many physio sessions, massages, and stretch classes, just to keep my legs mobile and get rid of the stiffness. It really makes a difference. The therapists from Phyllis Tuckwell visit me at home for those or I can go to the Beacon Centre. I also use my step outside the back door to do my stretches.”
“I’ve been in regular contact with staff at the Beacon Centre, who have been extremely helpful and accommodating in a number of ways. Dr Beata has always been ready and willing to help and advise me on medication, particularly for my spasticity and saliva issues. The occupational therapy (OT) services have proved very useful, and Liz, one of their OTs, has provided me with lots of advice and support. I’ve had ramps installed at the front and back of my house, and advice on adaptations in the home, including a new downstairs wetroom, wheelchairs, grab rails, standing aids and walking aids. It’s all been arranged with remarkable efficiency and has really made a huge difference.”
Our OTs assess each patient’s current and future needs, and develop a programme with each individual, to help them manage living everyday life with their illness. This can include giving advice on managing symptoms such as breathlessness, arranging for the loan of equipment such as walking aids, and advising on suitable wheelchairs. They can help patients to develop coping strategies to continue with their work, leisure and social activities, increasing patients’ independence and helping them to live as full a life as possible.
“I’ve had regular physiotherapy sessions and advice from Laura, one of Phyllis Tuckwell’s physiotherapists, because of the spasticity in my legs. This has been a big help. On the dietary side, I’m in regular contact with and have had visits to see Claire, one of the dietitians, at the Beacon Centre, to discuss diet and where to source soft food, as I have swallowing difficulties.”
The physical and emotional impact of living with an advanced or terminal illness can lead to muscle tension and pain. Our complementary therapists offer a range of treatments, including massage, reflexology and aromatherapy, which can help ease this tension, and relieve stress and anxiety, promoting patients’ wellbeing.
“I’ve had four massage sessions with Vanessa,” said Paul, “which have proved beneficial and have led me to have regular massage treatments.”
“In conclusion, I can’t praise the Beacon Centre highly enough. I feel very well looked after. I really feel that they genuinely care for my needs and will go the extra mile to help me. Living with a terminal illness can be a lonely place, but to have so many people looking out for me is a huge source of comfort.”