December 9 2013 Latest news:
Friday, November 1, 2013
A hospice to be built in east Norfolk aims to offer a peaceful retreat for dying patients. But a cancer sufferer feels it would be a missed opportunity not to build it at the James Paget University Hospital in Gorleston, reports Sam Russell.
When she saw the diagnosis, she accepted she was going to die.
It was a cruel twist of fate for mother-of-two Louise Gedge, aged just 48, but she did not give up.
She has fought her terminal cancer for the last two years and has nothing but praise for the doctors and Macmillan nurses who have helped her.
But nothing could prepare her for the battle she endured when she needed help the most.
For when her condition worsened she had to access care through A&E – together with people with broken bones and viruses.
She faced lengthy waits, had to explain her condition to many different people and was left on a general ward.
The stress has sapped her of strength.
And from her inpatient bed at Northgate GP Unit, she hopes to tell the powers that be that things do not have to be like this.
“Up until three weeks ago I was doing everything more or less by myself,” explained Mrs Gedge, of Keyes Avenue, Great Yarmouth. “Cooking, caring, driving – lots of things.”
Then, three weeks ago, things changed.
“I started to feel ill but thought I would weather it over the weekend,” she said. “It got to the Monday and things weren’t great.”
Terrified of the stress of hospital delays and red tape, she did not go to the James Paget University Hospital (JPH) until days later.
Once there she waited four hours before she could see someone from the palliative care team.
After more delays she was put on a general ward.
“It was quite a busy ward and a busy mix,” recalled Mrs Gedge. “Things seemed to get better the next day, but then I had a very bad night and that scared me.
“I felt very much that I had to keep my wits about me.”
She said hospital staff did all they could, but she had to explain her medical needs many times and felt she had to fend for herself to survive.
After further scans it was decided that her condition had stabilised and she could be transferred to a bed at Northgate GP Unit.
“But unfortunately on the last day I was told I wouldn’t come [to Northgate] until 10pm as the ambulances were tied up,” she said. “It really did knock me.
“It made me more depleted, more diminished every day from the person I was.”
Her dream is of hospice care in the grounds of the JPH with a covered walkway from the hospice to the main hospital.
This, she hoped, would cut out some of the stressful delays.
She said patients were not allowed flowers in hospital and there were no ice cubes, for when people were too weak to drink.
A hospice beside the hospital would allow the little things that make a difference without extra stress, she added.
And she did not care if the hospice surroundings were pretty or not – as long as access to hospital care was simple.
“All I want is a covered walkway so a porter can wheel me across,” she said. “It’s so hard to get across this idea of the stress.
“If you break a leg you’re working towards getting better, but this is different. I’m not a weak person and I have fought every way along this road.
“I’ve done as much as I can but now I’m at the stage where I can’t and this is where we need to start getting our act together.
“If everybody is having to go through this it puts you off getting in touch with your GP.
“It doesn’t have to be like this.”
The civil servant, who has two children aged 16 and 20, was diagnosed with advanced bowel cancer just over two years ago.
She did not have the usual symptoms, and by the time her tumour was identified her condition was terminal.
Her primary tumour was removed at specialist cancer centre the Christie Hospital in Manchester, after rounds of chemotherapy.
She said the Louise Hamilton Centre had been a “brilliant” source of support for her and they were halfway there – but needed the hospice next door.
She is appealing to East Coast Hospice bosses to reconsider building its centre in the hospital grounds.
The charity is currently planning to build a hospice called Margaret Chadd House off Sidegate Road in Hopton.
But Mrs Gedge said the hospice needed to be beside the hospital.
“All we’re talking about really is the cost of rooms as all the other facilities are at the hospital,” she said. “I think ultimately it would save the NHS some money.”
She wrote to the EDP’s sister paper the Great Yarmouth Mercury in July arguing the same, but is renewing her efforts after experiencing the angst of the current arrangement firsthand.
And she has made a video, helped by her Macmillan nurse Julie Brown, so her thoughts are clearly recorded after she is gone, in a bid to sway the current thinking.
Bernadette Auger, medical lead for specialist palliative care, said she was fully behind Mrs Gedge.
“We want to bring it back to focusing on patients and what actually would make a difference to an individual patient,” she said.
“And Louise has put it so much better than we can.”