St Luke’s Hospice patient supports campaign to widen access to care

THIS month, St. Luke’s Hospice has been supporting a new national campaign aimed at widening access to the vital support hospice’s provide for people with life-limiting conditions and those who care for them. The ‘Open Up Hospice Care’ campaign highlights how hospice care is available beyond hospice in-patient units, including in people’s homes.

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Darren Goodman, from Thurrock, shares his experience of hospice care:

In May 2017 a new ‘Hospice Heart Partnership project’ (HHP) was launched by St. Luke’s Hospice aimed at supporting people with Advanced Heart Failure. Funded by St James Place Charitable Foundation Trust the project implements a shared care pathway between St. Luke’s Hospice, the Cardiology team at Basildon and Thurrock University Hospital, and the North East London Trust Community Heart Failure team

Referrals were made to the Hospice by clinical professionals from the Cardiology team at Basildon and Thurrock University Hospital, and North East London Trust Community Heart Failure team. One of the first patients referred to St. Luke’s was Darren Goodman.

Darren is 46, married, lives in Thurrock and has two children age 8 and 21. He was diagnosed with Cardiac Amyloidosis in 2016. A diagnosis which completely changed his life, as his heart condition could not be cured and had to be managed with chemotherapy. Following a 12-week spell in Basildon Hospital Darren was referred to St. Luke’s Hospice in April 2018, as part of the Heart Partnership Project.

Darren said ”I didn’t know what to expect from the Hospice or really why I had been referred to them except that I knew my condition was incurable: The way I was treated by St. Luke’s came as a total surprise and completely changed my perceptions. As soon as I walked in through the door the atmosphere of the place, the people and everything about it was unlike anything I had ever experienced in healthcare before. I first met with Claire, (Heart Failure Clinical Nurse Practitioner) and later by Virginia (Assistant Directory of Care & Quality) and Hospice Doctors who explained that the main aim of me being under Hospice care was to keep me out of Hospital! They explained that together we would formulate a plan of care and wellbeing that would enable me, together with the Hospice, to manage my symptoms and improve my general health so that I remained stable and as fit as I could.

Over the following months, under Hospice care, I become stronger, confident and much fitter. Through weekly physio therapy sessions – which again was unlike any other type of physio I had experienced – I learned breathing techniques and how to manage my energy levels; the Hospice staff literally inspired me and opened my mind to what was possible and how I could help myself to improve my situation on a daily basis. They helped me to recognise my own feelings of when I was tired and needed to rest compared to when I could improve my health by doing simple exercises or going for a stroll. We discussed nutrition and the effect it had on health and energy levels. Being in Hospice care gave me great peace of mind, there was always someone I could call and talk to if I felt ‘things weren’t right’ – this made me feel I wasn’t on my own. They gave me so much knowledge about my health that I had confidence to go forward rather than look on the bleak side of my health.

All of this was carried out alongside me attending hospital and routine clinical cardiology appointments. I was pleased to have received news in October (2018) that I had been considered as a priority patient for Heart Transplant Surgery … something which up to that point had been a life-saving dream to me. I am sure that all the care and support I had received from St. Luke’s had helped prepare me in so many ways, physically and mentally, for this next big step in my life.

I was admitted into Hospital in late October receiving transplant surgery within 3 weeks – Amazingly I was back home on 4th December – I had to take things very easy but it was one of the best Christmases ever for me and my family!

Although it is still early days my recovery is going well and I am already starting to do things which I could not manage prior to my transplant. 2018 has opened my eyes in so many ways, and I have had many new experiences, but I will never forget St. Luke’s Hospice and the part they have played in turning my life and that of my family around. The Hospice is still continuing to offer support and guidance and it’s reassuring to know they are there, locally, just a phone call away, should I need them.

We are planning 2019 in a very different place to this time last year. I am so grateful to everyone who has helped me, cared for me and enabled me to look forward to a new future”

For more information on the campaign and to find out about the ways you can get involved, visit: www.stlukeshospice.com

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