Anne U's Story

Anne, one of our Living Well patients, was diagnosed with Motor Neurone Disease (MND) in December 2018.

“I had been seeing a neurologist at Frimley Park Hospital,” says Anne. “When she confirmed my diagnosis, she also referred me on to other organisations that could help me, and that was when I was introduced to Phyllis Tuckwell.  One of their Specialist Doctors, Dr Sarah, came to see me at my house, and she’s been in touch ever since, arranging follow up appointments to see how I’m doing and making sure that I’m seeing the right teams at Phyllis Tuckwell to help me with my changing needs. The team at Phyllis Tuckwell also helped me and my daughter Gemma, when we were completing my Continuing Healthcare application earlier this year.”

“The Phyllis Tuckwell team held our hand through the whole application process,” says Gemma. “It wasn’t a great time for us, and we were incredibly glad to have their support.”

After her referral to PTHC, Anne was invited along to twelve weeks of Day Hospice sessions, which is part of our Living Well service. Living Well supports over 800 patients a year and is designed to help them, and those closest to them, manage the impact of their illness, cope with changes, improve their wellbeing and remain as independent as possible. The team is made up of specialist palliative care professionals who provide a range of therapeutic services to promote physical, emotional and spiritual wellbeing. Support is tailored to each individual’s needs, and includes helping patients to remain as mobile as possible, feel more in control, make choices about their current and future care, and develop coping strategies to help manage their illness. Day Hospice runs three times a week, on Tuesdays, Wednesdays and Fridays, from 10am to 3pm. Patients attend one of these sessions each week, over a series of weeks. Here they can access nursing care and therapies, attend any of the Living Well therapeutic sessions which are held that day, and meet other patients, sitting together to chat over tea and biscuits, and enjoying a three-course meal together at lunchtime.

“The Day Hospice sessions were fantastic, and a real high point of Mum’s week,” smiles Gemma. “The rest of week was arranged around them; she didn’t want to risk missing any of them because of other appointments. While she was there she would see Phyllis Tuckwell Physiotherapists, Occupational Therapists and Complementary Therapists, and she could also catch up with Dr Sarah if she needed to. Because Mum couldn’t drive herself to the sessions, Phyllis Tuckwell arranged for one of their volunteer drivers to collect her from her house and take her to the Hospice, and then drive her home again afterwards. That was really helpful for us.”

“It was lovely there,” says Anne. “We were given lunch, coffee, wine, and we could have massages too, from the Complementary Therapists – foot, hand, shoulder and neck. Some people even had manicures too! I went to a Relaxation session as well, which I enjoyed. It was very easy to fall asleep in there! And there was Chaplaincy support too, which I didn’t expect, but which was very important to me. There was always somebody there to talk to, and a communion service if you wanted to go.”

“The nurses were lovely too. I remember Bev and Jan in particular. They were always checking on me during the day, to make sure that I was comfortable – both physically and emotionally – which I really appreciated. Being there, in that positive atmosphere, helped me to get over the shock of my diagnosis.”

“You hear the term ‘palliative care’,” says Gemma, “and it’s easy for things to get very negative and depressing – but at Phyllis Tuckwell it’s not like that at all. When you walk in you’re greeted by cheerful reception staff, when people pass you in the corridor they always smile and say ‘hello’. It’s cheerful, it’s light, and there’s an upbeat atmosphere. It’s the simple things that make the difference. When Mum and I went back to the Hospice, some months after she had finished her Day Hospice sessions, the staff there still remembered her and came over to ask how she was. A lot of care is about ‘what’s wrong with you’ rather than ‘who are you’ but not at Phyllis Tuckwell – they don’t define you by your illness, they treat you as an individual person.”

“The Physiotherapists and Occupational Therapists have been very supportive,” says Anne. “They contacted me quite soon after my referral to Phyllis Tuckwell, and have been in touch regularly since then. Catherine, one of the OTs, has visited me at home; she came once during lockdown and several times before that. She also phones me up to see how I’m getting on. It’s all about what she can do to make my life a bit easier. She’s always thinking ahead to the next thing I might need. Because my illness is progressive, my needs keep changing, and she’s very aware of that. At the moment she’s sorting out some additional support for my neck. She’s ordered various different pieces of equipment for me: a hospital bed, a commode chair, that sort of thing. And she’s changed the equipment I have as I’ve got more disabled. She’s so lovely and really so supportive. It’s comforting to know that I can email her if I need to, and always get a response very quickly.”

“Since finishing my Day Hospice sessions, I’ve had two visits from Complementary Therapists at home, who came to give me a foot massage. I’ve had several phone calls during lockdown too, just to check on how I’m doing, as I live on my own. Both Gemma and I have also been offered counselling as well, by the Patient & Family Support team. We haven’t felt that we have needed it so far, but it’s comforting to know it’s there if we change our minds.”

“We really had no idea of the amount of support that Phyllis Tuckwell gives and how much of that is not just for those at the end of their illness. I had only moved to the area a few months before my diagnosis – I moved to be closer to Gemma. I’d heard of Phyllis Tuckwell, just word of mouth, and I knew that people spoke highly of it, but I had no idea of all the services it offered.” “We didn’t realise the sheer breadth of the care that it provided,” agrees Gemma. “I’ve lived in the area a bit longer than Mum has, but even then I hadn’t fully appreciated quite how extensive it is. I didn’t know anything about its Care at Home services, or that its In-Patient Unit was so big. We’re just so amazed that this one establishment is able to do everything that it does!”