Lucy Watts was an avid champion of palliative care for so much of her life – giving TED X Talks, speaking to Dr Tedros from the World Health Organization, appearing in BBC documentaries. Yet she was badly let down by palliative care services at the end of her life. In our latest video series, ‘Lucy’s Legacy’, we hear Lucy’s mum Kate, share her reflections on Lucy’s life and death. In this blog, Kate shares her reflections on the palliative care services and how Lucy was treated at the end of her life.
“Lucy always had health problems but we did not know what was in store for her future. When I first held Lucy in my arms I never foresaw that I would also hold her in my arms again at her death. No parent should ever experience this. You are brought up knowing that you will bury your parents, possibly a sibling and maybe a partner, but not your child.
We later learned that she had a neuromuscular disease/myopathy. This caused Lucy to have complete digestive system failure (she had an ileostomy and urostomy), oesophagus problems, dislocation of her joints, restrictive lung disease, heart problems, bladder failure, kidney failure, scoliosis, heart rate problems (breathing and low sats) and many other difficulties too numerous to mention. As each year passed her pain increased.
Following an admission to ITU (Intensive Therapy Unit) in December 2021 Lucy was sedated and ventilated and not expected to survive. She had multiple bloodstream infections, systemic Candida infection which also infected her Hickman line, pneumonia, sepsis and multiple organ dysfunction syndrome. This left her more debilitated, sicker, weaker with post intensive care syndrome, severe deterioration to her eyesight and slight memory loss/cognitive impairment. She never fully recovered.
Lucy left the ITU on Christmas Eve in December 2021. In mid-January 2022 a multi-disciplinary team meeting (MDT) was held at our home attended by Lucy’s consultant from RLH (Royal London Hospital), Dr B from the Palliative Care Department at Southend Hospital, the palliative care nurse from our GP surgery, myself and one other student nurse – and obviously Lucy. Lucy wanted a low dose antibiotic (prophylaxis antibiotics) which was agreed in principle by her consultant and rather than the fentanyl patches that were no longer working plus a morphine injection 4 x daily (30 mg per dose) which was also ineffective, but for a continuous IV administration via Lucy’s Hickman line at a hugely reduced dose which had been agreed in principal by Dr B’s predecessor, Dr A. This would need an additional pump which Lucy was battling for with the local health authority (Clinical Commissioning Group or Integrated Care Board as it’s known as now) to provide. Both these were totally dismissed by Dr B who informed Lucy that she would live ‘until she was at least 83’. How wrong was that prediction.
It was following this meeting that Lucy and I stopped being supported. Our GP was fantastic, as was the consultant at RLH. However he was retiring so the GP was out of this depth. He didn’t have the consultant to advise him. The GP kept asking the Palliative Care nurse employed by the surgery to visit, but she too was not able to help without the support of the Palliative Care Department at Southend Hospital. As far as the doctor in charge was concerned, Lucy was not palliative so the Palliative Care nurse stopped visiting and checking in regularly because her hands were tied. Despite being employed by the GP Practice, she could only take Lucy’s case to the Palliative Care Department at the hospital. Consequently Lucy and I had no support from the RLH because her consultant was retiring and no hospital to go to in an emergency besides Southend Hospital where she was terrified of going because there was a lack of specialists available. Lucy had hoped to be taken on by Addenbrookes Hospital but the backlog of appointments following the pandemic made this almost impossible, Lucy had made several appointments to speak to the relevant specialists privately but needed the referral to be made on the NHS as we could not afford to see these specialists on a regular basis privately. We felt so alone and forgotten about. Despite St Francis Hospice in Romford and St Elizabeth Hospice in Ipswich (both of whom she worked for) neither of them were able to treat Lucy because she came under the Palliative Care Department at Southend Hospital. They felt they would be treading on the toes of Southend Hospital’s Palliative Care Department. Such a sad, sad situation to find ourselves in with Lucy’s life hanging in the balance.
Lucy was taken into Fair Havens in Southend in March 2021 under the care of Dr A who wanted to see what he could do to improve the quality of Lucy’s life. We spent 7 weeks there (with Molly, Lucy’s assistance dog). It was at the tail end of the pandemic so visitors were very restricted. The staff there were unable to do Lucy’s TPN (except one nurse who could not work 24/7) so Dr A requested that I stayed too. The conclusion of the stay was that by adding in several medications (that would require additional pumps), the main one being an intravenous morphine Lucy’s quality of life could be improved. The fentanyl patches were not being absorbed through Lucy’s skin and she was injecting morphine 4 times daily at a dose of 30mg to no avail. The morphine just formed a lump under her skin which did not disperse.
A PCA (Patient-controlled analgesia) proved highly effective whilst Lucy was in hospital. However they are not usually used in the community. Unusual, yes, but not unheard of. It would greatly reduce the amount of morphine from 120mg (30mg x 4 doses) per 24 hour period to 60mg per day and would work because Lucy would get the full dose each day.
As mentioned, this would require additional pumps to be supplied by the Integrated Care Board (ICB). This request was met with questions, proof from several medical professionals which although Lucy gave, these pumps were not forthcoming. The ICB wanted to buy the pumps rather than lease them via a company. Having had years and years of experience with pumps, they are very temperamental. We could go months without any problems, but then we would have a spate of malfunctions. If we had allowed the ICB to buy them, if these went wrong there would be no guarantee of a replacement within 4 hours which forms the basis of all agreements with medical pumps via a company. This request was batted back and forth between Lucy and the ICB who consistently asked for proof that Lucy had already given until her death in April 2023.
I believe the palliative care department at Southend Hospital decided it was not acceptable. They wouldn’t directly say “No” to Lucy, but continually said how unusual it was and that it would be frowned upon if she were admitted to hospital. Yes it is unusual, but if that is the only way Lucy can receive pain relief, then surely that should be non-negotiable. NO ONE should be denied adequate pain relief. Lucy had sublingual Fentanyl tablets, but these are for breakthrough pain for moving, washing etc. but not as a long-term pain relief solution.
Lucy wanted palliative healthcare services to be aware of the plight of long-term patients like herself. She totally appreciated that the service cannot include every long-term sick patient, but that each patient should be taken on their own merit. Obviously Lucy’s life was cut extremely short.
Had Lucy been accepted by the Palliative Care services at Southend Hospital, when she was admitted to Resus on the day before she died, I think a representative from the Palliative Care department would have visited her. We were left to our own devices in Resus. Doctors did come in occasionally but I don’t feel the severity was noted. Had her notes contained a Palliative Care notification, I think she may have been moved to ITU earlier. I’m not suggesting that she would have lived, but the distress that was caused should and could have been avoided. Lucy NEVER complained, but she was constantly saying “Mum, I’m dying, why isn’t anyone doing anything?” If they only knew Lucy, they would’ve known she would not have been crying out like that. I’m sure the staff in Resus must hear this so often, but Lucy never made a fuss.
Unfortunately as the head of the Palliative Care Department at the hospital also oversees the running of the local hospice, Fair Havens, Lucy could not request their services either as she was not ‘deemed’ palliative. Not that she could’ve been treated at Fair Havens over the last two days of her life because she required medical intervention, but prior to this Lucy couldn’t even access their services.
Lucy was the voice of Palliative Care on the NHS website, talking about how palliative care had greatly improved her quality of life. Sadly for her, the last 15 months were appalling. Both she and I felt abandoned. Lucy was such a huge advocate for good palliative care, yet was denied this very care on her deathbed.
I believe that Lucy should have been under the palliative care department in Southend Hospital. Their own policy states:
“Our palliative medicine department works with terminally ill patients and patients with chronic and complex long-term conditions to control pain. We provide emotional, psychological, social and spiritual care for all patients, their families and their carers.”
Did Lucy not qualify as a complex long-term patient? Why did they not cover her care? Why was she denied this service?
This was the very service Lucy constantly championed, praised and spoke so highly about at every opportunity. Outside of Southend Hospital Palliative Care Department under the guidance of Doctor B, she was considered palliative from the GP to other hospices and even Dr Tedros, the WHO Director.
Lucy had survived her prognosis that she wouldn’t see her 18th birthday, then her 21st birthday. Being given a palliative diagnosis opened up so many doors for Lucy. Her consultants no longer felt she was looking for a cure, but for her life to be made as comfortable as possible. This gave the consultants the opportunity to look at improving her quality of life. Lucy cheated death on so many occasions, she had survived sepsis more than 20 times. So often doctors had explained to me that this was the end of the line for Lucy, but she would just bounce back and carry on as before, albeit with greater difficulty each time. She would always lose a little more of herself with every near-death experience.
Lucy gave an NHS TED X talk purely about palliative care services and the difference it made to her life, but as I have already said, sadly not in the last 15 months of her life. Night after night I would listen to her crying in pain and feel that the service she had fought so hard for was not there for her when she needed it the most.
In the last 15 months of her life her pain increased immeasurably. Her body was deteriorating rapidly. She had very little quality of life. We had nowhere to turn for help nor even advice. Lucy’s spine became worse to the point that her ribs were touching her hip on the right-hand side. Her neck began to disintegrate, she lost two inches from her neck. She was choking on a regular basis. Despite drawing attention to these additional problems, no one seemed to know what was happening. Lucy had to be sitting upright, balanced on cushions which were problematic as we could not get her comfortable. She had a neck support to try and alleviate the problem. Lucy also was perspiring profusely. It was burning her skin and we were all worried about her getting pressure sores. She could not be moved very easily in the last 6 months of her life so changing her sheets became a real hassle for Lucy.
Lucy would cry every night for hours on end. She could not get comfortable nor sleep. I (and the nurses/carers) would attempt to help get her cushions in the right position but nothing really helped. It was pitiful and distressing to listen to. I cannot begin to imagine how painful and difficult life was for her in the last year.
Lucy felt abandoned and regularly said she felt she was only valued when she was doing something for other people. That made me feel extremely sad. She was such a huge champion for palliative care, yet she was denied any real help at the end of her own life. What a tragic way to feel at the end of your life – undervalued, forgotten and abandoned.”
Lucy died in hospital in April 2023, at 28 years old. Kate has shared Lucy’s story to encourage all palliative care services to look at each person’s case on their own merit, so that other patients do not experience what Lucy faced at the end of her life.
Watch Mum, I’m Dying here.
Watch Abandoned by Palliative Care here.
Acronyms:
ITU – Intensive Therapy Unit
MDT – Multidisciplinary Team
ICB – Integrated Care Boards
WHO – World Health Organisation
RLH – Royal London Hospital
TPN – Total Parenteral Nutrition
PCA – Patient-controlled Analgesia
NHS – National Health Service