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Friday, 28 February 2020
AN ambassador for Sue Ryder has criticised the closure of the charity’s hospice in Nettlebed where both her parents passed away.
Kelly Landau says she is alarmed by the decison to shut Joyce Grove without having a new bedded facility elsewhere.
Her parents, Kay and Steve, from Shiplake, spent the final weeks of their lives at the hospice before they died of cancer in February and April 2016 respectively.
They received such good care that their daughter organised a series of events and sponsored challenges which raised tens of thousands of pounds for the charity.
Ms Landau says that having access to an inpatient service was vital.
As the Henley Standard reported last week, Sue Ryder will close the hospice on March 31 and focus on its home service through its palliative care hub, which it launched in April 2018.
It says the cost of maintaining the Grade II listed building was prohibitive and demand for its six beds was decreasing in line with national trends. There used to be 12 beds but half were shut in April last year.
At the time, the charity pledged to open a new bedded centre elsewhere but now says this wouldn’t be financially viable.
Once Joyce Grove shuts, anyone wanting a bed will be referred to the Sobell House hospice near Oxford or Sue Ryder’s Duchess of Kent hospice in Reading, although places aren’t guaranteed. Ms Landau, who was made a Sue Ryder ambassador, a voluntary role, in 2017, says her mother struggled when she left Joyce Grove at her own request and became very distressed. She was rushed back but died hours later.
Sue Ryder says its surveys show most people now want to die at home, but Ms Landau says the reality is harder for patients and their families than many people imagine.
She also disputes the charity’s assertion that demand at Nettlebed decreased as she knew of people who were refused beds due to a shortage of places.
Ms Landau said: “I’m angry and upset because of the link with my parents. This latest news was a real shock to the system — we knew closure was on the cards but always thought there would be new beds somewhere.
“We were told in 2018 that there was a serious financial struggle and they were hoping the home care service would turn things around.
“They say it’s driven by changing demand but it’s hard to accept that because Mum and Dad couldn’t have been cared for at home. The hospice would have to be offering a lot more than what was available four years ago.
“Mum wanted to go home during her final days, when her judgement was affected by her illness, and they arranged that for us. However, we weren’t equipped for the practical realities and I can’t see how it would be different now.
“She went downhill very quickly and it became very distressing for all of us, including her — there wasn’t much dignity in her situation. If she’d stayed in the hospice, we wouldn’t have been left with certain unpleasant memories.
“Dad wanted the same thing soon afterwards and we wouldn’t allow it. There’s pressure on family members to give loved ones what they want but it doesn’t always work out.”
Ms Landau has been on a break from fundraising since Sue Ryder announced the hospice would close. She was too upset to continue but accepted the promise that new beds would be provided.
Now she says many families are questioning why the charity changed its mind.
She said: “There’s more scepticism than positivity. It’s an emotive issue because the hospice is such a safe, magical place but we were assured that they were trying to place beds somewhere else.
“There has been so much focus on ‘ hospice at home’ when not everyone wants that. Nettlebed is unique but you could have the same brilliant team offering care elsewhere and it’s sad that it won’t happen.
“To say that too few people wanted beds is a load of rubbish. We were lucky they found Dad a place because of Mum’s situation but they didn’t have enough beds for every patient that needed one. I know they needed an immense amount of money to keep the hospice going and it was extremely hard to find it all. I have no doubt that they explored every avenue but it’s such a massive venue and it would be a lot cheaper to operate from a new building.”
Ms Landau, who lives in Blewbury, near Didcot, still plans to fundraise again.
She said: “The closure will be devastating for me because it was a big comfort to be able to return when I wanted.
“I started fundraising for the hospice specifically because I needed a reason to get up in the mornings.
“However, the outpatient service will still play a vital role and I wouldn’t want to take it away from those who need it. It has taken time for me to get my head around everything but I’d rather be involved than not.”
Sue Ryder says it struggles to raise the £3.1 million it needs to provide palliative care across South Oxfordshire, of which just over a quarter comes from statutory funding.
It says its outpatient service, a phone line offering specialist advice and rapid response care, has grown in popularity while inpatient referrals have dropped sharply. Bed occupancy was about 70 per cent in 2018 and this has since declined to below 50 per cent.
• One of the final Sue Ryder sales will take place at Joyce Grove tomorrow (Saturday) from 10am to noon.
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