“We’ve lived locally for a long time,” says Sarah, “so we’d heard of Phyllis Tuckwell before. When we were told that Dad’s cancer was terminal, we knew that at some point he would hopefully be cared for by them.”
Sarah’s dad, Peter, was referred to Phyllis Tuckwell towards the end of the summer in 2020. He was contacted by our Community team, whose Clinical Nurses Specialists (CNSs) are often the first to see those who need our care. They are pivotal in assessing each individuals’ needs and the needs of their families, and can offer symptom management, and refer patients on to other teams within PTHC, who can offer therapies, counselling and practical support. They can also discuss with patients where they would like to spend their last days. Some choose to stay on our In-Patient Unit at the Hospice, where we offer 24 hour medical and nursing care, while others prefer to remain at home, being cared for by our Hospice Care at Home (HCAH) team, who can visit daily, and are always at the end of the phone if they are needed.
Two of our Clinical Nurse Specialists, Karen and Julia, visited Peter and his wife Lesley at home, to find out about more their situation, and tell them about Phyllis Tuckwell and the services they might want to access. Peter was experiencing some nausea and mild pain, and so was also visited by one of our Consultants, who gave him some new medication to try. “That was definitely beneficial,” says Sarah. “He had month or two of more stability with some of those symptoms after that.”
Karen and Julia came again to see Peter and Lesley for a follow-up visit, and to discuss Peter’s options for end of life care. “Dad was still mobile and independent at that time,” says Sarah, “but they came to the house because of the pandemic. I don’t think they wanted people travelling to the Hospice if they didn’t have to. They all wore masks, aprons, gloves – full PPE – for each visit, but Mum and Dad didn’t feel it made any difference. The pandemic had been declared several months before that, so by then everyone was used to facemasks and hand sanitiser and everything. Mum and Dad were just grateful for the support they received.”
“Covid had changed things so much. Karen and Julia explained that if Dad wanted to spend his last days in the Hospice’s In-Patient Unit, or in hospital, visiting would have been very restricted for us all. They also explained that there may be fewer beds available too. They told Mum and Dad about the Hospice Care at Home service, and suggested that Dad might find it easier and more comfortable to stay at home for his last days. It would also be more comforting, because we would all be able to be with him as much as we wanted. They were amazing. They explained all the options, very sensitively, and then gave Mum and Dad time to think things over and come to their own decision about what they wanted to do. Dad had presumed that he would go to the Hospice for his last days, but after finding out more about the options which were available, he changed his mind. Mum had some apprehensions about how it would work but, once they had all the information, they both agreed they’d rather he stayed at home, and it was definitely the best decision in the end. Dad was able to access all the medical, personal and spiritual care he needed, and we were able to be with him 24/7. His close family could visit too, such as his brother, and he was in familiar surroundings, with food and drink when fancied it.”
“We knew that once Dad’s condition started deteriorating, it would be quite quick,” says Sarah. “It was around the beginning of September that he started to become weaker and gradually get a few more symptoms. The Clinical Nurse Specialists were brilliant. They would ring Dad once or twice a week, and we could ring them if we felt things had changed. Mum and Dad live in Wonersh and my sister, Rebecca, lives in Elstead, but I’ve moved up to the Wirral. Knowing that Phyllis Tuckwell were in regular contact with Mum and Dad, and that we could call them whenever we needed to, was very reassuring. At one stage Dad really wasn’t feeling very well, and we were worried it was a sign of something more acute. We called them and they assessed him over the phone and considered all the possibilities of what it might be. Speaking to them was invaluable. By that time, lockdown had eased and I was able to visit Mum and Dad. While I was there, Dad had another slight deterioration. I stayed for a while but then went back home. Knowing that he and Mum could contact Dad’s GP or Phyllis Tuckwell’s Nurses if things got worse helped to reassure me when I wasn’t there with them.”
“Dad gradually became weaker and more tired, and his appetite decreased. There weren’t any drastic symptoms. He was able to slowly increase his medication with advice from the CNS team over phone, which helped him a lot. Towards the end of September I went back to visit, knowing that he was possibly in his last weeks. He and Mum had mainly been receiving phone calls from Phyllis Tuckwell up until then, to keep an eye on how he was doing, but as his condition deteriorated Julia referred him to the Hospice Care at Home team, and he started getting daily visits from their Nurses and Health Care Assistants. They helped him with personal care – washing, position changing – and nursing care. When he wasn’t able to take his oral medication anymore, the District Nurses and HCAH team, with advice from the CNS team, were able to sort out a syringe driver for him to use at home, so he could still have the medication he needed for the last week or so, to keep him comfortable. The HCAH team also liaised with the District Nurses, who assessed him for a hospital bed downstairs, and when it arrived Phyllis Tuckwell’s Nurses helped him into it. The communication between Phyllis Tuckwell, the District Nurses and Dad’s GP was amazing. In those last two and a half weeks there were times when Dad needed someone to come out to see him, and we had to ring up to see if anyone could come, and someone always did, even in the middle of the night. Sometimes it was one of the HCAH team, sometimes it was a District Nurse; they would arrange it between themselves and just let us know who would be coming. It was like they were one big team. We were also fortunate to have been offered a Health Care Assistant to be with Dad overnight a couple of times, because he was waking up during the night needing medication or support and reassurance, and we just needed a night or two’s break from that. My sister and I were staying at Mum and Dad’s overnight by that point, to help out and be there if he needed us in the night, so to have a Health Care Assistant be with him for a few nights made such a big difference to us. It meant we could all get a full night’s sleep knowing that he was being looked after. Each time it was the same Health Care Assistant, and to have that continuity was wonderful.”
The HCAH team continued to visit Peter daily, and as well as caring for him, they also supported Lesley, Sarah and Rebecca throughout this difficult time.
“We were supported as a whole family,” says Sarah. “They didn’t just look after Dad, they looked after us all. Every time they rang, they would ask about Dad and how he was doing, but then they would always ask specific questions as to how we were doing, me, my mum, my sister, they even asked how the dog was coping with it all! They would ask if we were managing to get out and have break and some fresh air, or they would say we sounded tired and ask if we were getting enough sleep. It was very individualised, personal care and it was very much appreciated. They also helped us to recognise the signs which showed that Dad was near the end of his life, supporting us by giving us the information we needed so that we knew what to do from a practical point of view.”
“Dad died peacefully at home. Julia rang later that day, and we let her know that he had died. Afterwards, we continued to be supported by Phyllis Tuckwell. We all separately received offers of counselling and bereavement support, in the post and by phone, which we haven’t needed yet, but it’s nice to know the option is there if we do.”
“Dad was immensely grateful to Phyllis Tuckwell throughout his illness. He used to say how much he appreciated the amazing care they gave him, how lucky he felt that he was being looked after and how grateful he was for what they did. He said it every day.”
“Phyllis Tuckwell is such a wonderful charity. They helped us so much through such an awful time. I feel humbled at how much effort they put into helping us, especially at a time when it was so difficult for them because of all the PPE they had to wear, the logistics of coming to visit Dad, their own staffing levels, the extra cost of all the equipment and PPE – Covid made everything so much harder, but they never expressed any difficulty or reluctance, they were so supportive, all the way through.”
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