Some 100,000 patients in the UK with inflammatory bowel disease (IBD) don’t have access to adequate care, according to a survey from the patient charity, Crohn’s and Colitis UK.

IBD nurses are instrumental in improving the quality of life for patients with IBD as well as helping to cut significant costs to the NHS, yet many health services are not offering the recommended nursing level.

As the first point of contact, the specialist nurse role provides expert care, often during distressing times.

These specialist nurses are able to coordinate expensive therapies in a cost effective way, as well as reducing A&E visits.

Studies have shown that IBD nurses help with a 38% reduction in hospital visits and a 19% reduction in in-patient length of stay.

IBD costs the NHS £900 million every year, with the average cost per patient being £3,000 annually.

These costs are comparable to diabetes or cancer as treatment options can include effective, but expensive, biological drugs and surgery.

Recent researchhas also revealed that six out of 10 IBD services in hospitals do not currently meet the recommended standard for the number of IBD nurses necessary to deliver the right level of service and support.

The survey also found that 80% of respondents without access to a specialist nurse did not know that they should have access to one, highlighting the information gap that patients need to understand and manage their condition effectively.

The charity also found that standards of IBD care are higher in centres where the IBD team includes a nursing role.

Isobel Mason, nurse consultant and IBD nursing development manager at Crohn’s and Colitis UK said: “It seems inconceivable that these roles need justifying when there is so much evidence of the contribution specialist nurses bring to patient care.

“More than 100,000 people are not being offered the health support they deserve or is recommended, and many more are struggling to be seen by a service that is under pressure – a return to the dark days when one-in-four specialist nurses were threatened by redundancy and almost half asked to work outside their specialty in more generic role would be a disaster for everyone affected by chronic conditions. More nurses means better care.”

The charity is also asking hospital chiefs and IBD teams to work directly with the charity to support the delivery of more IBD nurses locally, as well as working with IBD nurses and gastroenterologists to provide new resources that can facilitate job and business planning for health service development.

Dr Ann McMahon from the Royal College of Nursing said: “Specialist IBD nurses have been praised for the invaluable support and expertise they provide to improve patients’ quality of life, giving them more control over their treatment. We would welcome more specialist nurses to reach those who currently don’t have access to the care they deserve.”

IBD patients describe the nursing role as a ‘lifeline’.

Ste Walker, 25, from Huddersfield was diagnosed with Crohn’s Disease in 2012.

Recently Ste has spent more than 21 months in hospital and was finally discharged in February with no more than five days at home in between.

“The last six months have been incredibly tough. I was getting depressed and my mental state was deteriorating fast while in hospital. Before I was discharged, myself and the doctors took the decision to remove my Hickman line [a central venous catheter].

“I had sepsis – blood poisoning – eight times last year, I’m still being sick daily and I’m still in a fair amount of pain, but I am at home and that to me is a huge step forward. I have access to a fantastic IBD nurse, which is so reassuring now that I am finally out of hospital and I know she is there to support me whenever I need her.

“My IBD nurse has been amazing and I couldn't fault her. She is great as I can ring her at anytime and she answers. If I need advice she gives it, and gets in touch with my GP, consultants and specialists if I need them. She really is super amazing and I can’t thank her enough for all her help and support.”