IBD Patient Panel
St. Mark's Hospital has an IBD Patient Panel
The group meets regularly to discuss topics of care within the hospital. This is a forum for patients who use the services within the hospital to provide the team with feedback and suggestions for improvements.
If you feel that you would like to contribute to the Patient Panel by either attending the meetings, or by highlighting a particular area you would like to see the panel address, please do not hesitate to contact us. Scroll down for further information.
The next Patient Panel Meeting is at 6.30pm, March 13th 2012, Room 4, Level 6 of St. Mark's Hospital.
Inflammatory bowel disease open information day
Saturday the 12th of November 2011
The inaugural inflammatory bowel disease open information event took place on Saturday the 12th of November, in the Himsworth Hall in St Mark’s Hospital. This day was an open invite to people and family members affected by inflammatory bowel diseases (IBD). This day was set up in conjunction with the IBD Patient Panel & the team at St Mark’s Hospital, with the aim of raising awareness of Inflammatory Bowel Diseases and the specialist services available within St Mark’s Hospital to care for patients with IBD. The IBD patient panel also hoped to raise awareness & recruit other patients with IBD cared for at St Mark’s to their group which provides a means of reviewing the services & providing feedback to the hospital on the IBD services.
Approximately 160 people attended the day & were asked to provide feedback by completing a feedback form. Of those that did attend about 40% were not patients of St Marks, but came to learn more about these conditions.
“Absolutely amazing! I was so moved by the support and dedication the team at St Marks have/are providing to people with IBD…thank you”
“Your absolute professionalism in communicating a holistic approach including the patients’ involvement to improve IBD care for all”
“I was very impressed by the high standard of presentations by all the speakers. All the talks were clear & informative, pitched at the right level for non-professionals without being patronising. I appreciate the up- beat tone and the humour – all the speakers inspired confidence! I learnt a lot as I had hoped. My 14 year old god-daughter has UC & I came to understand more about the condition and to support her mother”
This was overwhelming positive – below are some of the comments from the day as follows…
“It covered a wide range of topics and allowed informal questions to be made to the staff during breaks”
“This has been a very informative day, as parents of a newly diagnosed son we have learnt a lot about Crohn’s disease and the treatment & services offered. It has been great to speak to professionals on a one-to-one basis – Well done & thanks you very much”
“Well planned – Well organised day – Well done. Really useful to know about the huge amount of support that is available”
The day commenced with a brief introduction from Marian O’Connor, Lead IBD Specialist Nurse and opening remarks provided by the Deputy Mayor of Harrow Councillor Nizam Ismail. Dr Simon Gabe presented the history of St Mark’s hospital, starting with Frederick Salmon, who was a colorectal surgeon in 1835. He decided to found his own specialist institution calling it “The Infirmary for the Relief of the Poor Afflicted with Fistula and other Diseases of the Rectum’ in Aldersgate Street in the City of London. The hospital then expanded & moved to premises in Charterhouse Square, City Road & to Northwick Park in 1995. Dr Gabe highlighted clearly the advances that have been made over the years, with the work of Frederick Salmon & other members of staff including Percy Lockhart-Mummery, Sir Francis Avery Jones & John Nicholls.
Dr Ailsa Hart, the Lead IBD Consultant at St Mark’s hospital, then presented the advances in the medical management for inflammatory bowel diseases. Within this presentation, Dr Hart highlighted the current knowledge on the causes of IBD, being an interaction between our genetics, our immune system and the environment that we live in. Dr Hart highlighted the research currently taking place at St Mark’s which is vital to try to understand these complex diseases.
At present in the UK, 250,000 people suffer with inflammatory bowel diseases with the common age at diagnosis being between 15 -35 years of age. Inflammatory bowel disease consists of two main conditions Ulcerative colitis & Crohn’s disease, which are lifelong chronic diseases which cause inflammation in the gastrointestinal tract. Common symptoms include diarrhoea, abdominal pain & weight loss. The medications used to manage these diseases aim to reduce inflammation & heal the bowel wall.
Mr Ian Jenkins, colorectal surgeon presented the surgical options for managing IBD. This is often the feared by people who suffer with IBD, however Mr Jenkins highlighted that there have been many advances over the years in the techniques of surgery & recovery processes which have allowed much better outcomes for patients. Laparoscopic or keyhole surgery is offered and has many positive benefits to the patient, such as smaller surgical wounds & less time to recover afterwards. Enhanced recovery is used as a means of optimising rehabilitation of patients after their surgery.
Marian O’Connor, Lead IBD Specialist Nurse, then presented the many specialist nursing services within St Mark’s Hospital which provide on-going support and nursing care to patients with IBD. These include a team of out-patients & ward nursing staff, specialist nursing teams including IBD, Stoma care, Nutrition & Biofeedback. Marian then emphasised the importance of on-going support in the management of IBD, in particular the support from charities such as CCUK (Crohn’s & Colitis UK) and CICRA (Children with Crohn’s & Colitis).
We were very fortunate to have a large number of stalls (detailed below) who provided an opportunity during the lunch period to visit them & gain further information and advice on common aspects of managing IBD. The stalls included the Dieticians, Nutrition & IBD nursing teams & Smoking Cessation team from Brent PCT. Charities represented were the Red Lion Group, CICRA, CCUK & the St Mark’s Foundation & the friends of St Mark’s.
Inflammatory Bowel Disease Patient Panel
Minutes of Patient Panel Meeting 6th of October 2009
Minutes of Patient Panel Meeting 8th of December 2009
Minutes of Patient Panel Meeting 26th of Jan 2010
Minutes Patient Panel Meeting 23rd of March 2010
Minutes of Patient Panel Meeting, 8th March 2010
Minutes of Patient Panel Meeting 14th September 2010
Minutes of Patient Panel Meeting 9th November 2010
Minutes of Patient Panel Meeting 13th September 2011
St. Marks Patient Panel Meeting Agenda 18th May 2010
Minutes of Patient Panel Meeting 1st November 2011
Minutes of Patient Panel Meeting 10th January 2012
You can email the St. Mark's IBD Patient Panel here - nwlh-tr.ibdnurse@nhs.net
