Developing an information resource: an update on the Leeds initiative
Rhona MacLean, Lecturer- Practitioner in MS, Leeds Metropolitan University
Tracy Sharp, MS specialist nurse, Leeds NHS Trust
Way Ahead 2008;12(3):10-11
In 2005, the MS specialist nurses in Leeds and York reported on a collaborative venture, looking at improving the provision of information for their clients in response to reported need1.This article aims to give an update on developments in Leeds.
The consultant neurologists in Leeds who have a special interest in MS have been instrumental in developing the services for their client group, who come from a large regional area outside of Leeds itself, as well as from within the city. In 1998 a health needs assessment on people with MS living in Leeds was carried out2. This led to the development of services over the last nine years, including the appointment of a number of members of an extended multi-disciplinary MS team - a community-based specialist social-worker, two further specialist nurse posts (resulting in a total of three) and the community-based MS team (O/T, O/T assistant and psychologist).
The specialist nurses are all currently based within the acute hospital setting and run weekly disease-modifying treatment clinics alongside the consultant neurologists as well as weekly nurse-led clinics for support and symptom management. From these clinics, referral to other members of the multi-disciplinary team can be carried out as required. The person is usually seen immediately for assessment and a plan for further assessment or treatment is arranged.
The MS nurse clinics enable anyone with MS who has been seen by a consultant neurologist in Leeds, to be seen according to their perceived need. This can be at any time - following diagnosis, flare-up of symptoms, or during a relapse. Depending on the MS nurse's triage assessment, an appointment will be given for either 30 mins or one hour. Much of this time will be spent discussing treatment options and signposting to information and resources that will enable the person to self-care and make informed decisions about their own management and life issues. Provision of relevant, evidence-based information is paramount to enabling this.
Following the work on information needs and the relocation of the MS team from St. James's Hospital to Leeds General Infirmary, an application was put into the MS Society for a grant towards the cost of setting up an information resource centre. The plan was to provide a wheelchair accessible computer table, touch-screen computer with 'neuronet' programme installed, printer, and literature carousels. Estimates were obtained for all the items. As the total cost exceeded the grant awarded, further applications for financial support were sent to the local branch of the MS Society and the "Friends of Seacroft Hospital". Full funding was swiftly agreed and received.
There were two options for the location of the information centre - in the day-case unit on the neurology ward (where people receive treatments, such as IV Methylprednisolone or Mitoxantrone) or the new out-patient clinic based in Seacroft Hospital. As more people would benefit from the resource in the out-patient clinic (plus there was more space available), it was chosen as the preferred site.
The out-patient clinic is located in what was an in-patient ward. Limited adaptation has been carried out to transform it into a very roomy, quiet department. The waiting area was previously a six bed-bay. The information centre is located in one corner with plenty of space for a number of people to access different sources of information at the same time. The clinic staff ensure that the computer is switched on and accessible. The MS nurses take responsibility for ensuring the information leaflets from the MS Society, MS Trust and local MS centre are all available. Relevant research updates and information on therapies in the news are posted on notice-boards. Copies of the NICE (2003) guidelines are also available3. The MS social worker ensures that relevant information on benefits and local services are available. In addition, she holds a monthly 'drop-in' service at the MS clinic.
It would be wrong to think that there haven't been problems setting up the information centre, some of which are yet to be resolved. Within weeks of the computer being installed, the hospital was broken into at night. Fortunately, the computer was secured to the work station so couldn't be removed, but the touch sensitive screen was damaged. The ink cartridges from the printer were stolen, resulting in the need for replacements - this is an on-going cost for which funding has to be available, as replacements are not provided through the NHS Trust.
Despite encouragement, many people have been reluctant to access the computer. The clinic staff and MS nurses questioned people as to why this was. There are two main reasons - the first is that quite a number of people are not regular computer users. The other reason is that people are unaware of it being there for them to use. If the computer is not in use, it goes into "hibernation" and the screensaver comes on. To try and rectify this, we have put a poster on the wall, above the computer to encourage people to use it. Sadly, this too has failed.
When people are encouraged to use the computer, they do so and feed-back about the neuronet software has been very positive. The neuronet programme is also available on CD Rom for people to copy onto their computers at home. Unfortunately, neither the clinic staff nor MS nurses have the time to stay in the waiting area to encourage people to use the computer and / or demonstrate the software available for use. In order to address this, a number of volunteers will be trained in its use and will be 'on hand' at the MS clinics. The volunteers are all people who have MS and attend the clinics. Needless to say, this plan is not without problems - volunteers need to have criminal record bureau (CRB) checks carried out and will also need to be trained.
We are still very positive about the information centre and know that many more people will benefit from it. We didn't envisage some of the problems we have encountered, but hope that our experience will inform - and prepare - others. We feel that involving service users in the running of this centre is important, as service users have guided all the work and developments in the MS multi-disciplinary team. We would encourage other MS centres to set up an information centre and hope to be able to provide further feedback and audit results in the future.
References
- MacLean R, Russell, A.
Innovative ways of responding to the information needs of people with MS.
Br J Nurs 2005; 14(13):548- 551 - Ford H, Gerry E, Johnson M et al.
Health needs assessment in a population-based cohort of people with multiple sclerosis (MS) living in Leeds.
Nuffield Institute for Health, Leeds - National Institute of Clinical Excellence.
Multiple Sclerosis: management of multiple sclerosis in primary and secondary care.
London: NICE; 2003
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