‘Hospice needs to be reminded it’s dealing with patients, not units’

Lindsay Morgan, 60, whose wife Susan, 57, has terminal cancer, said he understood other carers shared his feelings but were reluctant to come forward.

“But nothing will be done if our grievances are not aired,” he said.

“Our main complaint is that the changes and reasons behind them have not been properly explained.

“And if you don’t understand something, it becomes a problem.”

The former building services technical manager who lives in Ladyhill added: “It appears patients are now subject to a six week re-assessment.

“The perception is that people will be discharged at the end of that period.

“But how can people be ‘discharged’ when they have a terminal illness? How can they ‘meet their targets?’ They haven’t been cured. They’re still dying. And that’s what we find difficult.

“I can understand that the hospice is probably trying to accommodate as many people as possible.

“But carers haven’t been told and no-one has been bold enough to get to the bottom of it.

“There have just been rumours and innuendos.”

Lindsay said day care had been reduced to a drop-in service, after the six week review. Carers could no longer look forward to a day of respite when their loved ones were looked after at the hospice, nor could they enjoy their own dedicated carers’ Mondays.

“Only someone in the same situation can understand what you’re going through,” he explained. “It was a great release. Maybe we laughed too much – but sometimes that’s the only way you can get through it. That’s how we dealt with it.

“Sue says it’s too much effort to get ready just to go down for a couple of hours in the afternoon.

“And I feel the same. By the time I’ve organised care for her, and got her settled, it doesn’t seem worth it.

Lindsay is quick to praise the hospice and doesn’t want to seem negative.

“They do such a wonderful job and I still support them,” he said.

“But I feel the changes are financially driven rather than patient driven.

“I’m sure there are economic restraints but it appears to me that the hospice has gone from being a charity to a business model.

“Someone needs to be reminded that what we’re talking about here is patients, not units.”

ADULT services manager Elaine Tolliday agrees the way the hospice works with patients has changed considerably since the new £200,000 palliative care centre was opened in June.

But she claims the more flexible approach is in direct response to consultation with carers and in line with Department of Health strategy.

She said: “We used to provide a service that suited only a certain group of people who could attend for the whole day.

“The service was not attractive for younger people or accessible for those with families, who work or come from different cultures.

“The new palliative care centre offers much more choice and we now care for twice as many people as this time last year.

“We’re also appealing to a whole group of patients who never came before - it’s not unusual to see people in their 30s, 40s and 50s.”

She added: “When someone is referred, we talk to them and their family in depth about what they’d like to achieve.

“We organise a six week programme to help them attain their goals. Their problem could be pain control, or breathing difficulties. We put together a package of care. Everything is tailored to the individual.

“They may want to go on a shopping trip, have lunch at a pub or even return to work – some people can live with palliative illness for many, many years.

“At the end of the six weeks we review where we’ve got to, to see if we need to do anything differently or to set new goals – that’s the reason for the review.”

Elaine confirmed no-one is ever formally discharged and added: “Of course patients with complex needs can still use our services.”

She said carers regularly filled in questionnaires about the services: “We found the majority couldn’t commit to a full day.

“So now we offer a Monday evening drop-in service for those who work, in addition to our dedicated Monday afternoon support group, both of which are proving popular.”

Carers can also come in on Monday mornings for one-to-one sessions with healthcare professionals and to enjoy complementary therapies.

The bright and airy palliative care centre, completed with a Department of Health grant, has different seating areas where patients can gather to read, chat and relax.

There’s pool and table football as well as television, Nintendo Wii and a dedicated art room.

In addition there are two consulting rooms, an en-suite bedroom and a quiet room. Hydrotherapy is also available.

Elaine was very concerned to hear of Lindsay’s comments.

She said: “When people are unhappy we really try to understand why and work with the family to resolve issues.”

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