'I wouldn't do that to my dog' - Shocking shortcomings in Norfolk's end-of-life care revealed
PUBLISHED: 08:18 19 October 2018 | UPDATED: 11:01 19 October 2018
Shocking shortcomings in care for the dying in Norfolk can today be revealed.
People’s dying days are being made even tougher by a shortage of 82 specialist beds and services that vary hugely across Norfolk, councillors heard.
The situation is piling pressure onto loved ones - including one man who told yesterday’s Health Overview and Scrutiny Committee that his wife of more than 50 years would be “padded up” overnight, and if she soiled herself, she would not be cleaned until the morning.
The meeting was dedicated to examining the services for those who are dying - called palliative care.
It heard that families who expected their loved ones to go into an NHS community hospital in their last days were “surprised to find these beds are not available”.
Robert May, 76, from Great Yarmouth, spoke about when his terminally-ill wife Sylvia was taken into hospital with sepsis last year.
Mrs May, 73, has a range of conditions which are only seen combined in 40 in every 250,000 patients.
One of her illnesses, fibrosing alveolitis, had never been seen by her doctor it was so rare. She cannot walk, has to use a catheter, and often cannot breathe.
But after a stay in the James Paget University Hospital (JPUH) for sepsis, as nurses were discussing her moving back home, the couple’s daughter asked what happened at night if her mother needed to use the toilet.
Mr May said she was given the shocking news about be left “padded up” overnight without being cleaned.
He said: “And I can’t do it, it needs two people. So she’s laying there in that all night until the following morning. And we’re doing this to thousands of people as we speak.”
Mr May, whose wife never came home and is now cared for at Ritson Lodge, in Hopton, spoke as councillors grilled health bosses.
Brenda Jones, Labour councillor for Lakenham, said: “I’m really concerned. Is it not one of the most degrading things we can do to say people should defecate and lay in it overnight? I wouldn’t do that to my dog.”
Councillors heard how there was “unequal provision of hospice and specialist palliative care in-patient facilities across the county with no beds available in the Great Yarmouth and Waveney area”.
At Tapping House, in King’s Lynn, up to seven beds are available on the NHS. Priscilla Bacon Lodge in Norwich provides 16 specialist in-patient beds for those who still needs focused care. Some beds are available in Suffolk at St Elizabeth Hospice and St Nicholas Hospice.
There are also some beds available in Norfolk’s hospitals. But these were only for those who needed to be under the supervision of clinicians.
The NHS nationally and locally prefers people to be cared for at home in their final days.
In all areas apart from Great Yarmouth and Waveney a hospice at home team is in place, offering the care of a hospice but in the community.
A new service for Great Yarmouth and Waveney is currently out for procurement.
A carers’ advice line is about to be launched and health bosses said they were looking to address inequalities across the area.
Becky Cooper, head of palliative care at Norfolk Community Health and Care (NCHC), said: “Before we started with the STP (sustainability and transformation partnership) there was significant variation.”
She said health leaders looked at hospice at home services as well as beds but said it was found beds did not necessarily need to be in a traditional hospice, and could potentially be in care homes or the community.
But she was optimistic the postcode lottery for palliative care would be fixed and that since the hospice at home service had been running in central Norfolk they had received 97 referrals, and all had been able to die at home.
She said: “I’ve worked in Norfolk and Waveney for many years. There’s been in the past tension on how we should take it forward. But for the last two years it’s been about taking it forward together.”
Melanie Craig, chief officer at NHS Great Yarmouth and Waveney Clinical Commissioning Group (CCG), added: “We know that across Norfolk and Waveney that in the next six months or so we will be expected to deliver a long term plan.”
Analysis: Patient must be kept at forefront
The landscape surrounding palliative care is complex, which is one of the reasons it has been so difficult to get it right.
Not only are there a number of places palliative care is provided - at home, in an acute hospitals, in a care home, in a hospice - but there are also different criteria to get a spot in any of those services, and even more specifications for who gets the funding and from where.
It means for relatives it is often confusing at an already distressing time and that is why it is the patient and their family which must be at the front of any reform.
If the various organisations can work together to make sure all in Norfolk have equitable access to end of life care, then it will be a success for working more closely and in a more integrated way.
But with an overspend of £65m across Norfolk’s health organisations last year, it is clear there will not be more money pumped into the area. Instead, it is hoped efficiencies can be found.
Concern over access to funding
Mr May was also concerned about how funding for NHS care at the end of life was calculated.
He said even though his wife’s terminal condition meant she was bed bound and at a 70pc chance of having a heart attack, she was not assessed as ‘severe’ in a number of categories used to determine whether a patient receives continuing healthcare funding.
He said because Mrs May’s conditions are so rare, especially when combined, it was impossible for a nurse assessor to review her eligibility and only a specialist could.
And the form needed to access the funding was complex, he said.
“It’s like they want to stop you getting the funding, not help you access it,” he said.
“To find palliative care in Norfolk is very difficult especially with limited funds.”