My name is Lucy Watts MBE. I’m from Thundersley in Essex and I have a life-limiting illness with extremely complex medical needs. I’m supported by my mother, Kate, my Assistance Dog Molly and a team of registered nurses (RGNs) and carers (PAs) who I employ using NHS funds. I am known for my work as a patient leader, disability activist and palliative care advocate, as well as for my businesses. I devote my life to the fulfilment of rights for disabled and/or chronically ill individuals and their carers, to the improvement of health and social care services and patient experience, to advance the involvement of people with lived experience in services, organisations, policy and professional training and practice, and expanding access to palliative and hospice care nationally and globally.
My life-limiting condition has affected me since birth, but I was able to live a reasonably “normal” life for 14 years, despite all my difficulties and needs and the regular contact with health professionals, but from age 14 my condition took a drastic turn, completely took over my life and became both life-limiting and life-threatening, deteriorating rapidly. My medical needs became increasingly complex and I relied on more and more intensive medical intervention to survive, as I continue to do so to this day. We were told when I was 16 that I wasn’t expected to reach 18. My condition left me dependent on intravenous nutrition, fluid and medication round the clock, administers via a line giving access directly into my heart, needing a tube to drain my stomach of acid and bile, and having two stoma bags to bypass my colon and bladder, respectively. I’ve been a full time wheelchair user from age 14 and now have a very specialist powered wheelchair that is like a bed on wheels and was largely custom built to meet my needs. Here I am now over a decade beyond my prognosis and having lived an amazing life, however recently there’s been a change in my health and I’ve needed additional input which we hope will get me back to having quality of life and being able to get back to my work.
When things changed….
In September 2020 I experienced a sudden deterioration in my health, with episodic vision loss, back to back infections, rapid decline in muscle strength, and a whole host of other symptoms. Repeated, latterly constant courses of intravenous antibiotics were not improving my health and I lost all quality of life, even having to stop all my work. Constant fevers, pain, drenching sweats, overwhelming fatigue and exhaustion, cognitive difficulties, poor memory, loss of abilities, progressive visual problems, joint stiffness, and more, needing to sleep most of the time and being unable to function – even reading books and watching TV is extremely difficult due to forgetting the plot — meant I lost everything I enjoy and my quality of life was almost none. Things kept progressing and my GP and main consultants were a loss as to what to do so my community palliative care nurse referred me to Fair Havens for a symptom control and investigations admission.
What hospice care means to me…
As a long-term palliative care patient, supported by The J’s since age 17 and having accessed other hospice services previously, both inpatient and community, I was not put off by a hospice admission. I understand hospices are not places only for death and dying but for living fully, with holistic person-centred care and support, built around what matters to the individual, and what their goals and wishes are. However, this would be my first admission to an adult hospice and I am aware of the differences between children’s and adults’ palliative and hospice care, so was unsure if my experience would differ from my experiences with children and young adult hospice services.
A sense of calm….
Wheeling into the beautiful environment of the new Fair Havens Hospice, an immediate sense of calm came over me. Immediately put at ease by all the staff. I didn’t feel the dread I usually feel at being inpatient in care settings, both due to the welcome I received but also due to my knowledge and experience meaning that I know hospices are not like other settings — they are unique in their environment and approach.
The Fair Havens palliative care consultants set to work organising the tests they wanted to run and reviewed all my needs and medication. They liaised with my team in London, as well as with my GP and local services, to meet my needs, gather necessary information and to prepare for discharge at the end of my stay. Initially no medication changes were made but my pain suddenly deteriorated a week into my stay and within 30 minutes it was dealt with, new drugs and higher doses added into my regime. Over my stay my pain relief was increased multiple times, always quickly and efficiently sorted so that I was not left suffering. I was also, following positive cultures, started on IV antibiotics and IV antifungals to try and get on top of the infections. The team organised a number of tests to try to get to the bottom of what’s going on. Sadly, we didn’t find the cause of what is making me so poorly, but I was discharged with a plan for next steps and a follow up appointment to follow my case being presented at grand rounds at Southend Hospital. I have utmost faith in the team as they have done everything possible and will continue to work with us to ensure we find out what’s going on and make further improvements to my quality of life.
However, my care was about more than just my physical and medical needs. Hospice care is all about the person as a whole and meeting their physical, medical, practical, psychosocial, emotional and spiritual needs, and Fair Havens absolutely epitomises this. Dame Cicely Saunders’ concept of total pain is at the centre of care. All the staff took time to talk with me, to get to know me, talking about Molly and my work and encouraging me to keep focussed on my goals. I regularly saw members of the wellbeing team including the spiritual care lead, as well as seeing the social worker and some support from the creative therapist. At the hospice I was Lucy the person, not Lucy the patient.
If I had not been in the hospice at the time my pain suddenly increased, I would’ve undoubtedly ended up in hospital. Hospitals cannot meet my needs and are great risk to me as I always pick up infections – and that’s without adding COVID into the mix – and an admission at this time would’ve been horrendous, especially as my mum may not have been allowed to stay with me to provide my 1:1 care that, with the best will in the world, ward staff cannot provide. The tests Dr Tosh organised would also have likely required an admission to get done rapidly, whereas being in the hospice this was much quicker and more seamless to organise without requiring an admission. Staying in Fair Havens prevented a risky stay in hospital and kept me safe and supported in an environment that no hospital can come close to replicating.
Every one of us….
As not all Fair Havens staff are trained in my specialist needs – my intravenous feeding (TPN) and central line care, my mother stayed with me and took care of that element of my needs, but when my 4 day admission became weeks (41 days in total), Fair Havens allowed a nurse from my Personal Health Budget (homecare package) to come into the hospice and provide for those needs so my mum could have those days off. My mum was given great support by the team, she saw the social worker who conducted a carer’s assessment and has since been referred for counselling and complementary therapy, which I know the is looking forward to. Mum is not very good at asking for help, and the team were excellent at supporting mum and making sure she is taken care of and supported, too.
Molly and Eddie….
Whilst inpatient in Fair Havens, they allowed my Assistance Dog Molly to stay with me for the admission, knowing she is highly trained to behave in all environments since she accompanies me out wherever I go in her duties as a working dog. They also recognised that Molly is a big part of my life and to have her there would mean a great deal to me. The staff got me to fill in a chart of things I wanted to achieve whilst at the hospice, and this included washing and plaiting my hair, and doing a hand cast with mum, sitting outside in the garden in the sun. They also pulled out all the stops on the Easter weekend to enable another special visitor to the hospice – Eddie (Edwina) the horse. Eddie is a horse I’ve known since she was 3, she’s now 18, and has been a part of my life. I hadn’t been able to see her for over 2 years, so her visit was extremely special. The idea only came up on the Thursday before Easter, yet the nursing team managed to organise her visit with all the risks assessments and permissions for it to take place on the bank holiday Monday. This visit gave me such a boost, but not only did it benefit me, another patient was also able to enjoy a visit from Eddie, who is a gentle giant and who behaved impeccably the entire visit. The hospice took great care in what was important to me and what brought me joy and I can safely say that although this was the first ever visit from a horse to the hospice, that is likely won’t be the last.
So how do I feel now?
As someone who knows and works closely around hospice and palliative care, and who has accessed palliative and hospice care for over a decade, I didn’t think there was much about my perspective that could be changed. However, my admission to the hospice did just that. In all the time I have known I have a life-limiting condition, dying at home has been my ultimate goal. In my head, if I didn’t achieve a death at home, then I would have failed – failed myself, and failed my family. Being in the hospice and receiving the fantastic care from the Fair Havens team – and witnessing the speed at which medication can be altered or added in to control symptoms – has transformed the way I view it. Now, if we are struggling at home when I am approaching end of life, or if I need a symptom control admission ahead of that time, I would no longer hesitate to request an admission to Fair Havens. We now have an extra layer of support with Fair Havens being on board, and I can rest assured that I will achieve my goals for my life and for my end of life – be that at home, or in the hospice.
This will be reflected in my advance care plan, so that everyone involved in my care is aware of this.
This is hospice care…
I hope this blog has shown the transformative experiences and benefits to patients and families of hospice care and how it is about so much more than just death and dying. Fair Havens helped me to make precious memories and do things I enjoy that are impossible at home at the moment and allowed me to be myself and not just a medical object that things are done to. I will be forever indebted to the team. I do hope, in future, I can use my position and the work I do to share the fantastic work of hospices and of Fair Havens in particular far and wide to challenge misconceptions and champion what it achieves.
Photo credit: Lucy Watts
Published 5th May 2021