Minutes of the IBD Patient Panel Meeting
Tuesday 1st April 2014
Barry Lawson, Judy Lawson, Carole Macdonald and Steve Williams. Sarah Gauntlett and Lynn Laramy (both committee members of the local Crohn’s & Colitis UK group) also attended.
Apologies received from Emma Hallett and CB.
The IBD Standards Briefing Paper:
Some panel members have copies of the draft document for reference, as provided by the local C & C UK group. Steve said he felt the Standards document has been clearly laid out and that it is easy for people to read and make sense of.
Re specialist nurse hours:
Barry stated that the IBD panel has already approached the Trust’s Board of Governors, the Chief Executive and the Medical Director to request an increase in specialist nurse’s hours. This request was made almost three years ago. At that time specialist nurses were being reduced rather than increased and the panel was told that a second specialist IBD nurse could not be funded.
Barry explained that, at last month’s meeting, it was decided we would go through this process again. The panel will send a letter to the commissioners of services in Torbay (under the direction of Dr Greatorex) and to the new head of Nursing Services at the hospital. A copy will be sent to Dr John Lowes (Medical Director) and to Dr Cathryn Edwards (Consultant Gastroenterologist).
In addition it was agreed we will contact the local members of parliament. The Standards (first stage) recommendations have been presented to parliament, both to the House of Commons and the House of Lords, for review recently.
Last month Barry offered to draft a letter and bring it for discussion to tonight’s meeting. However he noticed in the latest C & C UK News magazine that C & C UK had already produced a briefing document and a draft letter to MPs, so he felt it would be better to coordinate our efforts with theirs.
Barry contacted the C & C UK Policy & Public Affairs manager at the national headquarters office, Philip Reynolds. He has said he will send Barry a copy of the draft letter and the briefing document. When Barry formulates our letter it can then be on the same lines as C & C UK’s. He will do this as soon as the documents arrive.
Philip Reynolds recommended to Barry that the panel and the local C & C UK group liaise over this and also keep him informed of developments. He said that he would then do his best to feed this back into the national picture. Peter Canham (C & C UK’s Patient Panel Coordinator) also wants be kept informed of our progress.
Barry will liaise with Dr Edwards to ensure she is in agreement with what we are proposing to do. The local MPs to approach for help in this matter would be Dr Sarah Wollaston, Anne-Marie Morris and Adrian Sanders.
Everyone agreed that it is very important to point out the need for more specialist nurse hours. Barry said he hoped that the Standards will soon be formally adopted by parliament. He also highlighted the fact that the IBD Department at Torbay hospital is held in high regard nationally and that we already receive an excellent service here.
Planning for the Open Day:
Barry confirmed that we will repeat this event this year. He said that unfortunately last year’s Open Day was not terribly successful due to the low number of people attending. Quite a few members of staff visited but not many patients or their relatives/carers came in. Sarah attended and set up a very good C & C UK information display for us. She said that someone from the group would be able to do the same again this year, which is much appreciated.
Barry stated we are going to hold the next Open Day on a clinic day in Hutchings Ward between 4.00pm and 7.00pm. The date will be Tuesday 2nd September. It will be held in the same room as last year.
Sarah said that C & C UK group will be able to help promote the event by displaying our posters on their noticeboard and also putting details of it into their local newsletter.
Emma has updated two posters for the panel – one gives details of the Open Day and the other is a recruitment poster for people to join the IBD patient panel. Sarah and Lynn took copies of these with them today.
It was agreed that posters will be displayed in the outpatient department and at all the community hospitals. Steve suggested asking Anita Coulson (IBD Specialist Nurse) for information on all the venues patients go to for IBD treatment, clinics etc. He said he felt all posters should be displayed at least eight weeks in advance. It is unfortunately quite difficult to get posters displayed in GP surgeries.
Lynn suggested that all the nurses who work with Dr Edwards could help promote the Open Day.
Barry explained that, as a panel, we cannot write or email patients directly to advertise the Open Day. The possibility of putting an article in the local papers and/or making use of local radio was discussed. Steve suggested sending a standard letter to all of the local newspapers nearer the time with information about the event.
Barry will speak for about ten minutes at the C & C UK AGM meeting (on Wednesday 11th June at 7.30pm, at the Imperial Hotel) and will promote the Open Day as part of his talk.
Lynn said she felt it is important to include information for parents of children with IBD at the Open Day. (Children with IBD attend Paediatric Outpatients, not Hutchings Ward, so a poster would be needed here). It is intended that a member of the IBD team will be present on the day and pharmacy staff will hopefully be able to pop in. A Stoma nurse may also be available to attend.
Update on the Buddy Scheme:
Judy informed us that there are five registered Buddies at the present time. Of these, two are active and the other three are awaiting further training before they can start work. The active Buddies are Judy herself and a lady called Julia. Emma has resigned from the scheme now and Judy has withdrawn from being the volunteer manager for the scheme. Anita has taken this over. Training is not happening at present, partly because two of the volunteers work full time. Two other people who had been registered, one of whom had been fully trained, have left the scheme.
Judy told us a new project manager will be appointed this month. They will oversee a project which will look at volunteer input, along with the hospital’s voluntary services department. This will be funded by the government and the purpose of it is to help quantify the amount of voluntary work in the hospital and the tasks which volunteers perform. It will be a national survey and will last about six months.
Judy feels that a scheme such as the Buddy Scheme can only be measured in terms of quality rather than volume of work. She said that the take up by patients of this service has not been very high to date.
Any Other Business:
Barry has been in touch with the Torbay and Teignbridge District Councils and has obtained printed information for C & C UK to have. There are lists of the toilets in both areas and contact numbers for the officers to contact with queries. The councils have said they want people to contact them individually if they are having difficulty using the RADAR keys or have any other problems with the public toilets. RADAR keys can be obtained from the local tourist office.
Barry passed the information to Sarah and Lynn to take back to C & C UK.
Emma has sent information on the website statistics to the end of February. 89% of enquiries were new. 10% came in from other parts of the world. Most visits were made by people living in Bath, followed by London & Burton on Trent. It is interesting that 68% of people visiting the website did so through Google. Some people are staying on the site for up to about 10 minutes.
Emma has said she may not be able to continue the analysis of the website use.
C & C UK Coffee mornings:
Sarah and Lynn told us that the local group is hoping to start up a regular coffee morning at the Country Table in Newton Abbot. A similar scheme is already running in Plymouth.
Next meeting: Steve gave his apologies for the next meeting on 3rd June.