Paul L's Story

Irish-born Paul was just 21 when he came over to Britain, working first in Manchester, then Leeds, Glasgow and finally London, before settling in Fleet.

His breathing difficulties first came in the form of asthma, possibly triggered by the dust and debris he encountered whilst working on various building sites as a young man. He was given an inhaler, along with antibiotics to tackle a chest infection, but the problem persisted. Paul was eventually diagnosed with chronic obstructive pulmonary disease (COPD) a condition where the airways become inflamed and the delicate air sacs in the lungs become damaged. Once able to lift and carry heavy loads on a building site, Paul now found that exercise, or even just walking, left him struggling for breath.

After settling in Fleet, Paul began work as a porter in A&E at Frimley Park Hospital – a job which he loved. Now, however, he was forced to take medical retirement, and found himself visiting the department for treatment, rather than employment. Each year his condition seemed to get a little worse. He saw doctors, had x-rays taken and was advised to give up smoking, which he has done.

18 months ago, Paul’s doctor referred him to Phyllis Tuckwell, and he came to Day Hospice for a trial visit. His condition was still deteriorating and he was feeling low. “I wasn’t getting out much,” he remembers. “I was starting to become housebound. I was on oxygen and there wasn’t any sign of things improving. To be honest, I really didn’t think I’d see my 40th”.

He began to attend Day Hospice weekly and was primarily cared for there by nurse Caroline Brooks. Caroline saw Paul each week, meeting with him when he arrived at the Hospice, discussing with him how his week had been and assessing his needs, both clinical and emotional. If he ever missed his weekly session, Caroline would phone him up to find out how he was, and gradually they built up a strong working relationship. Paul gained confidence from his time with Caroline and she continues to be his first port of call for help.
As well as the nursing and emotional care which Caroline provides for him, Day Hospice also gives Paul an opportunity to discuss his illness and medication with our doctors, access physiotherapy and occupational therapy support, and benefit from complementary treatments, such as hand massages, which he has recently started having. Caroline can also refer Paul to other members of the Phyllis Tuckwell team, including social work advisors, who can help patients and their families with the practical side of things.

At the time of his referral to Phyllis Tuckwell, Paul was living with his teenage daughter in a small flat. “It was dingy, and I couldn’t manage the steps. Every time I went out, I had to wait for 30 or 40 minutes, just standing there in all weathers, trying to get my breath back,” he says. Caroline was aware of his situation and explained to him that she could refer him to other teams within Phyllis Tuckwell, who could help him. Trusting Caroline’s advice, Paul agreed, and was referred to both our Occupational Therapists (OTs) and our Patient & Family Support (PAFS) team.

OT Catherine Fortescue referred Paul to Wheelchair Services for a manual outdoor wheelchair, as his flat was too small to enable him to use one indoors, and the steps which led up to his front door would have prevented him from bringing one inside the flat anyway.

Nikki Roberts, a Social Work Advisor at Phyllis Tuckwell, arranged a meeting with Hart Housing and Social Services at Paul’s flat, which she and Paul both attended. Once there, everyone was able to see that the building’s external concrete steps were large, steep and unsuitable for a ramp. Not only was the flat too small, but it was completely unfit for purpose. With Paul becoming increasingly reliant on his wheelchair to get around, he had now become a prisoner in his own home.

The meeting took place in December 2015 and Paul was immediately reprioritised, meaning that when a suitable house became available, just weeks later, he was offered it straight away. By the beginning of February we had managed to get Paul re-housed, and he and his daughter now live in a bright, airy and – most importantly – wheelchair-friendly house.

With Paul now becoming severely breathless after taking just one or two steps, and his new housing suitable for an indoor wheelchair, Catherine referred him back to Wheelchair Services for assessment for a powered wheelchair which he could use both indoors and out, increasing his independence without impacting his breathing. She also referred him to the Social Services OTs at Hampshire County Council who, working closely with the Housing Association, could ensure that all the correct adaptions which Paul required were made to the property.

Now that they have moved, however, Paul is having to pay for his daughter to get to school by taxi, as it’s too far for her to walk. Nikki has been trying to help him get funding for this cost from Social Services, but after his claim was rejected by them, she and Paul have turned to other means. Helped by Nikki, Paul has written a letter to his local MP outlining the situation and asking for support for the taxi fares, which he cannot afford to pay for himself.

As well as addressing his housing situation, Nikki has also moved Paul onto the correct benefits, as previously he wasn’t receiving the support which he was entitled to. She has also negotiated a Care and Support package, meaning that Paul now receives six hours of domestic help a week, support which is invaluable not only for him, but for his daughter too. We have also arranged for a Careline, funded by Social Services, to be installed in Paul’s house. This emergency alarm can be activated by Paul at any time should he get into difficulty at home, and paramedics can immediately be called to help him.

As well as helping with the practical side of life, we have been able to support Paul emotionally too. A volunteer from our Hospice Home Support team visits him weekly, staying for an hour or two to have a cup of tea and a chat, enabling Paul to talk about any worries or concerns he might have, or simply provide some company for him for a few hours.

Paul still attends Day Hospice, where Caroline continues to oversee his care. “It’s the only time I get out of the house,” he nods. In 2015, grateful for the help which Phyllis Tuckwell, and particularly Caroline and the Day Hospice team, had given him, Paul decided to shave his head to raise money for the charity which had supported and cared for him so well. He asked friends and family to sponsor him, and we wrote a Facebook post, appealing for a hairdresser to come along to Day Hospice to perform the shave. Local barber Eve Saunders immediately stepped up forward, volunteering her time and skills to shave off Paul’s hair and beard, and kindly sponsoring him for it as well, taking the total amount raised to over £330.

“When I was first referred to Phyllis Tuckwell, I thought it was for people who were dying,” Paul says. “I was still young and I was scared. But actually it’s really friendly. Coming here makes you feel normal. If you want to talk about your illness then you can, but you don’t have to, no-one makes you. It gives you that time away from it, when you don’t have to worry about it. It’s about people getting together and having a chat.”