Hope out of dark things – improving end of life care

Laura joined our Board in January this year and since then has championed the need to improve end of life care, becoming the Board lead for this important area of work. 

In the last 18 months, we have been working closely with local NHS and care services to help them improve support for families near the end of life, after we started to hear an increase in poor experiences of care.   

Since then, the local NHS has developed a new palliative care hub that coordinates care for people via the NHS 111 option 3 service – which now runs 24 hours a day. In addition, they are rolling out a training programme to improve community health and care staff’s knowledge of end-of-life care.

We’re part of the local NHS task group overseeing some of these initiatives, where we share personal stories like that of Laura’s to help improve the support that people receive. 

Stand back and give me the pen 

Laura first met our engagement team in Peterborough, just over a year ago, when she was taking her mum to get her Covid-19 booster jab.  

She told us, “It was a stand back and give me the pen kind of moment…. I just finally had this outlet and I just scribbled, and I scribbled for the full 15 minutes.”  

Laura explained how her dad had been diagnosed with throat, neck and tongue cancer and had three different surgeries to treat this.     

He was unable to eat or swallow due to the cancer and having had extensive radiotherapy. He was also in a great deal of pain in his back which started as soon as he began his radiotherapy and did not improve.  

Much of his care and treatment took place throughout the Covid-19 pandemic and so he usually attended appointments alone. When he was admitted to hospital for two weeks in the month before he died, only Laura was able to visit due to Covid-19 safety restrictions.  

She describes much of his experience of care as awful, although she praises the district nurses, the ambulance service and the Sue Ryder Hospice at Home team. 

Dad wanted to be at home  

Laura told us her dad really wanted to be cared for at home. 

“He’d only gone in (to hospital) for a day appointment to get his weight checked, but then ended up being admitted. We thought that he was just going to be fed up as he’d lost a lot of weight.” 

“We didn’t think it was that serious. Nobody had said anything. All of the communication that we had with the surgeons and his oncology team was that the surgery was completely curative.”  

The family were devastated to learn via a Facetime call at the side of the motorway on the way home from hospital that her dad didn’t have long left to live.  

“Dad Facetimed and said the doctors here and they told us it was terminal, he had months to live, and that they would look at getting us discharged as soon as possible.” 

Learning how to care for her dad 

Laura was the only member of her family able to visit her dad in hospital due to the Covid-19 restrictions.  

“Once we got the diagnosis, I was there every day. I had to be taught how to use his nasal gastric tube, do his feeds and that kind of thing.”   

But she wasn’t allowed to be with her dad when he was discharged from hospital, which meant that her dad came home with a bag full of medication and no instructions on how it should be taken.  

"Dad came home with a bag full of 14 or 15 medications and no instructions."

And so, Laura went through the prescriptions and made her own drugs chart to ensure he got the correct medication at the right time of day. 

“I had never given him medication via tube and had to work that out.” 

No care plan in place 

Laura’s dad’s health deteriorated quickly and by the time he got home from hospital, he could hardly walk.  

Although the hospital arranged for the delivery of a bed for her dad to sleep in – it didn’t come with the extension he needed to stop his feet rubbing on the baseboard. 

The family tried calling a variety of numbers, including occupational therapists and social care to try and get an extender for the bed, before they were finally put in touch with the district nurses. 

The district nurses put the family in touch with Sue Ryder’s Hospice at Home service, who gave her dad an assessment and provided the additional equipment he needed. 

“…the district nurses were absolutely horrified because they had not been made aware that dad had been discharged and so there was no care plan in place. Even though we were told dad was eligible for funding and we had filled in some forms. 

The GP surgery put an address my dad hadn’t lived in for twenty years on the form, and that he’d never had registered with them at all.” 

Not enough pain relief 

Laura speaks highly of the Hospice at Home team who were able to support the family on all but one overnight shift in the last weeks of her dad’s life.  

“Support from the District Nurses was great. Hospice at home - I cannot thank them enough which is why I now sit on the service users’ patient participation group.” 

But a major difficulty was that the night sitters were unable to administer medication via the NG tube and so Laura still had to get up throughout the night to top up his pain relief.  

There were also problems getting enough pain medication for her dad. 

Laura told us of one occasion when the district nurses were kept waiting for more than an hour and a half by the GP surgery for a new prescription to be issued. 

“… my dad’s pump had run out… The nurse had to phone me to talk me through how to switch it off because it was beeping through the whole house. And so obviously, the pain levels then just rose.” 

When Laura’s dad’s health deteriorated further, he did not want to be admitted to hospital again and died at home a week later.  

Hope out of dark things  

There were many aspects of Laura’s dad’s care where things could have been better. From better communication before he left hospital and afterwards from the GP surgery, to having equipment and a care plan in place when he was discharged from hospital.   

Laura told us she shared her story so that “something good could come out of something bad.”  

Explaining, “Grief is universal. Bereavement is universal. You can’t go through life without losing somebody. So, we just have to be better.”  

Laura is heartened by changes to services that are coming about as a result of listening to patients’ experiences. 

For example, protocols are now being put in place to help family members to get more respite by letting the Hospice at Home team administer painkilling medication at night.