Crohn’s Disease: ‘My partner is in agony but there is no help for her’
The partner of a woman crippled with pain from a serious bowel disease has hit out at the lack of support she has received from the health service.
Gemma Benson is being treated at the Ulster Hospital having suffered a flare up of Crohn’s Disease — inflammation of the lining of the digestive system.
Ms Benson was diagnosed with the painful lifelong condition after a colonoscopy almost a year ago.
But her partner Gareth Tuff said she has received next to no support or help in managing the disease and has had to be rushed to hospital at least once a month.
Crohn’s and Colitis UK have called for trained nurses to be put in place across Northern Ireland to help patients — currently there is only one Irritable Bowel Disease (IBD) nurse, based at the Causeway Hospital in Coleraine.
A local survey of the group’s members found that 90% of respondents would like access to an IBD nurse during a disease flare-up. Less than half were satisfied with help during flare-ups.
Mr Tuff said: “Gemma had a colonoscopy at Lagan Valley last September and was diagnosed with Crohn’s but we didn’t hear anything more. She has been in and out of hospital since then and about two months ago she had another colonoscopy at the Ulster and Crohn’s was confirmed.
“When Gemma has a flare-up she is in terrible agony. She is in constant pain, passes blood all the time, suffers black outs. She vomits and has lost a lot of weight.
“We have two daughters but neither of us can work because of all the pain Gemma is in. She can’t be left at home with our daughters in case something happens and I have to be there for her.
“She has been getting tablets from her GP but nothing else. She hasn’t had an outpatient appointment to see a consultant. Having a helpline number so she could speak to a dedicated IBD nurse would be a great help. She is in the Ulster at the moment and they have changed all her medication so hopefully they will be able to bring the pain under control.”
Helen Terry of Crohn’s and Colitis UK, said one issue with IBD was its unpredictable nature, leaving people needing rapid access to knowledgeable medical staff.
“Any patient who has a concern about their condition should have access to a dedicated telephone line so they can speak to someone who has the knowledge and experience of IBD.
“This service is generally provided by IBD nurses and is in place in many parts of the UK but unfortunately in Northern Ireland there is only one permanent IBD nurse.
“There should be structures in place to allow rapid access into secondary care when a patient needs it because you never know when they are going to fall ill.”
A spokeswoman for the Department of Health, Social Services and Public Safety said that while there is currently only one IBD nurse in Northern Ireland there are other specialist nurses who provide services to people with gastro-intestinal conditions, such as stoma care nurses.
She said: “Officials from the DHSSPS have engaged with the gastro-intestinal professional community and are currently working with the Health and |Social Care board and the Public Health Agency to scope current provision in this area and to |consider how best to use scarce |resources for the delivery of safe and effective patient care to |people who have gastro-intestinal disorders,” she said.