Why a Support Network?

Back in January 2011 a number of patients, relatives and Rehabilitation after Critical Illness (RaCI) staff started to think about setting up a support network. The main driver behind it was the experience of a previous ICU patient, Barry Vincent, identifying that it was through hearing another patient (Gordon Sturmey) talk to a critical care course about his critical illness experience, i.e. sharing stories that helped him recover and reconcile his own experience.

Sadly, Barry passed away and as a legacy to honour his wishes Sister Melanie Gager (RaCI Lead Nurse) met with Gordon and together they committed to the vision of an ICU support network.

Melanie invited key patients and their relatives to be involved and the response was amazing. Meetings were set up to decide the objectives of the network and plan the structure of the public meetings, together with designing posters and a newsletter to promote the group, which were published in August 2011.

There was a media launch at the Royal Berkshire Hospital ICU, which included local radio, newspapers and TV interviewing committee members and ICU staff.

The first meeting was held on 23 September 2011 at the Royal Berkshire Hospital Trust Education Centre and was kindly opened by Dr Carl Waldmann.

The evening saw a patient presenting their ICU experience, followed by an open session and informal chats over tea and coffee. The informal chats proved a huge success and are part of every meeting that we have held to date.

Since the first meeting we have had presentations from patients, relatives, RaCI staff, medical professionals and many others, including researchers who have asked for our input into their projects.

The network could not function without the ongoing support of the RaCI team and administration support provided by the Royal Berkshire Hospital.

Venue and Numbers

The first meeting was attended by 20 people and having seen an increase in those attending the second meeting, the committee decided to review the venue. There was a desire to meet away from the hospital in a more informal setting with the option to accommodate more people.

We held the next meeting at Maiden Place Community Centre and have seen the numbers steadily climbing to 46 and 52 at our last two meetings. This means we may have again outgrown our venue and may be looking to hold future meetings in a new venue in the New Year.

Support Group Aims

  • Provide support for all patients and relatives during the patient’s time in ICU as well as after their transfer from the unit/or discharge from the Royal Berkshire Hospital.
  • Referrals from other hospitals are also accepted.
  • Provide an environment where patients and relatives can share their experiences in confidence.
  • Royal Berkshire Hospital staff and GPs are allowed direct access to the group’s activities.
  • The group receives professional support and is underpinned by the Intensive Care trained professionals at all times.

Royal Berkshire Hospitals Intensive Care staff explain the workings of the Unit and former patients talk about their experiences while in the ward.

Chairman's Introduction

It is a privilege to be Chairman of the ICU Support Network - Reading, having been a patient in the Royal Berkshire Hospital Unit. The Committee and the ICU staff supporting the Network (on a voluntary basis) show much enthusiasm and commitment to the Network and its activities which should ensure its continuing success in achieving its overall aims.

The Network is also indebted to the Royal Berkshire Hospital staff from all departments who are involved with our activities both in undertake presentations at our meeting as well as providing administrative support.

Gordon Sturmey

Dr Tim Parke ICU

I was delighted to hear about the launch of the patient support group for patients (and relatives) who have required intensive care. The group is proving to be an invaluable resource for patients on their road to recovery.

Over the last decade it has been increasingly recognised how stressful intensive care is for patients and families. This can be particularly acute at the time of hospital discharge, and in the following weeks and months.

Our follow-up service, has highlighted the multiple needs of many ex-ICU patients, and provides ongoing psychological support and referrals to other health care professionals. However, the vast majority of us working in intensive care lack one vital qualification.
We have never been patients on intensive care ourselves. For that reason the support group presents a unique opportunity.

Patients who have been on intensive care have a wealth of experiences and sharing these can be hugely beneficial. Reassurance and advice can be given to other patients in ways that professionals are unable to do, and these activities compliment our follow-up clinic perfectly.

The benefits of an active patient support group also extends to the staff. Those of us working in intensive care can learn much from the issues raised and there is an agreed process to feed back to us regularly. This will be hugely valuable in informing our practice and make us more responsive to our patient’s needs.

All in all the Network is a most welcome initiative, which has produced many benefits, and we, as clinicians, are delighted to support it in any way we can.

A special mention...

Carl WaldmannA special mention is necessary for Dr Carl Waldmann, who has supported the group from the beginning and is always willing to give up his evenings to present to the group on numerous subjects, with his unique knowledge and experience of intensive care. How he finds the time to help the group having a family, being a consultant in ICU and club doctor of the League two high‐flying mighty O’s (Leyton Orient) is testament to the truly amazing person he is. Thank you Carl!!

The RaCI team are an outstanding set of healthcare professionals and individuals, whom the support group would not exist without. They give up a lot of their own free time, not only at the meetings, but behind the scenes in helping to keep the support group going. Many times they have just finished their shifts and instead of going to relax at home, they remain to reassure and care for patients/relatives that are in need of continuing support.

RaCI TeamThey help you find important things when you have lost them your smile, your hope and your courage

Salli Ward - Ex Patient