The first year in the life of a new support group

ICUsteps Newport has been up and running since August 2014. It has been an eventful year with many highs but also accompanied by some lows. The group began its journey several months before the first August meeting following a journey to Milton Keynes to meet up with their group with the view to starting ours.

To any hospital looking to set up a support group I would recommend that you visit an established support group and to also follow the guidelines to how to set up a support group. The guidelines became our ‘bible’ and as a group we found them extremely beneficial and as the saying goes why re-invent the wheel.

The recruitment of former patients was not a huge challenge for us. At our local hospital we have been successfully completing patient diaries for several years, and, on collection of the diaries many former patients had stressed an interest in becoming a support group member. We took details of those interested and decided to take the plunge in April 2014 where as a group we met for the first time. This was an interesting time for all of those involved as we got to know each and every member, learning about their experiences and journeys through Critical Care.

At our first meeting we had 8 extremely keen, motivated former patients all with many different stories to tell, all admitted to ICU with multi-faceted conditions but all with the same common factors; the after affects following a critical care admission: very vivid bad dreams, along with some funny ones, weakness, pain and changes to their everyday life and life choices.

The group was made up of 6 former patients and 2 relatives. The majority of the group had been out of hospital for over one year but there was one lady that had only been out of hospital for 8 weeks but felt that she was desperate to give something back. Our first meeting was very successful we elected a Chairman and a Secretary (even though we had no money or funding). We also decided upon a venue and we were fortunate to be able to use a chapel located on a hospital site so had indemnity insurance with free accessible parking, disabled access and most importantly a kitchen. We arranged another meeting and then decided to hold our first meeting and ‘Go Live’ in August 2015.

We were all incredibly excited and unrealistically expecting that we may not be able to cope with the demand! However, it was not to be! We did not have 1 person access us for the following meeting and we were all hugely disappointed. However, in hindsight it gave the group time to gel as a team. For the next 2 meetings it was still very quiet but instead of giving up we decided that we needed to advertise more widely. We designed a poster and placed this throughout the hospital and also advertised in GP surgeries, charity shops, supermarkets and post offices etc, also anywhere that people would allow us as well as the ICU Steps website. After much perseverance we were eventually sourced. The people that accessed us ranged from recently discharged patients to one person who had been out of ICU for 6 years and who was still encountering problems. As healthcare professionals the learning curve was and still is huge. The effects of an ICU admission became real and not just something you read about in the tabloids. We know that we have made positive changes to our patient diaries and have also made changes to the care that we deliver within the unit on the back of what we have learnt in the past year and the learning in ongoing.

We have found that even though the demand on the service has not been huge to date and certainly much less than expected our service development has been encouraging due to the result of the support group. The nursing and medical staff now attends the meetings on a regular basis, which is then forwarded to other members of the Critical Care Team. The former patients and who are the original support group members come to talk to staff on the staff training days including the doctors from junior to consultant levels and extend their experiences of their journey through Critical Care, enhancing our knowledge and understanding of what the patients go through during their stay with us. This in turn benefits the staff with increasing their knowledge base and enhancing patient care and experiences, hopefully in a positive way.

We have had a busy year, the group also became finalists in the Award for Volunteers of Aneurin Bevan University Health Board Trust, of which we were thankful that we were recognized. The new year brings new beginnings with hopefully more past patients accessing the group, which will be very welcome.