Audit of Motor Neurone Disease (MND) multidisciplinary team clinic services against NICE guidelines in a University Health Board

The main aims and objectives of the project were to ascertain whether people with Motor Neurone Disease (MND) were receiving a gold standard service at the MND clinics relating to key aspects of their care.

A further objective was to discover whether the professionals involved were adhering to the NICE guidance for the assessment and management of MND (NG42) and the MND Charter and to ensure that they were able to offer a high standard of care to their patients in the clinic environment.

There are currently 53 people with Motor Neurone Disease in the Aneurin Bevan University Health Board (ABUHB) area and 182 people in the whole of South Wales, which includes four other health boards. This is higher than the expected prevalence rate, of 7 per 100,000 which would equate to 158 cases. This high number does have an impact upon service provision.

The two MND clinics that were the focus of the audit report have been operating for approximately eighteen months and are based in a hospital clinic room in Blaenau Gwent and within hospice clinic rooms in Newport. People attending the clinics were invited to attend the nearest one to them to suit their geographical needs in order to minimise travel and to be attended by the professionals they were most familiar with. There were generally five people with MND invited to attend each of the two clinics.

There was some disparity between the clinics in the number and variety of professionals who attended them. In the north area (Blaneau Gwent), this was primarily staffed by a neurologist, a palliative care consultant, an MND Co-ordinator, a respiratory physiotherapist and an occupational therapist. In the South area (Newport), the clinic also provided a respiratory consultant and a respiratory nurse, in addition to the previously mentioned professionals.

It was decided from the outset to use the NICE guidelines as this clearly defined the standards that the clinics could be measured against. The questions were then worded accordingly with the standards as a frame of reference.

In order to obtain the views of both staff and patients alike, questionnaires were provided. The patient questionnaire forms were provided to patients or their relative during attendance at the clinics and following anonymous completion they were asked to place them in an envelope on the reception desk.

The staff questionnaires were worded differently to ascertain whether staff felt that patients were receiving the care as outlined in the NICE guideline NG42. These forms were emailed out to staff members and were either posted back or printed off as email, and collected without looking at the content at that stage to preserve anonymity.

There was minimal additional expenditure as the occupational therapists who already attended the monthly clinics were able to hand out and collect the questionnaires during their planned attendance. The cost of paper, printing and photocopying was provided by ABUHB Health Board and by the auditor’s personal supply.

People with the diagnosis of MND, under the care of the neurologist are invited to attend a clinic nearest to where they live. There were generally five people invited to each of the two clinics on a monthly basis.

The information that was required from the patients concerned demographics, i.e. age, gender and year of diagnosis, how often they attended clinics, in addition to their overall experiences of the care and quality of the care they receive and whether they are seen by everyone they needed to in the clinic environment.

The audit was conducted over a six month period and 26 patient questionnaires and 9 staff questionnaires were completed during that time.

One of the main difficulties was that the auditor was not present at one of the clinics. As a result limited numbers of patients completed the questionnaires from this clinic; resulting in an imbalance in ability to assess patients’ opinions.

One of the areas highlighted was the fact that the NICE guideline NG42 required there to be representatives from Dietetics and Speech and Language Therapy (SLT) present at the clinics (NICE NG42, Recommendations 1.5.2-1.5.4). Although patients did not identify that dietitian presence was essential at clinic and only 7% of patients viewed having a SLT representative as being important, 56% of professionals indicated that speech and weight issues were not assessed at the monthly clinics.

To address this issue, the neurologist, MND area co-ordinator and an occupational therapist met with therapy directors and managers to discuss the possibility of incorporating dietetics and SLT input at clinics. Although receptive to the value of their input at MND clinics, the initial meeting involved discussions around the limited capacity of staffing hours that could be released.

Another of the areas highlighted was the fact that certain professionals were not able to attend the clinics and this adversely affected patients’ experiences.

The NICE guidance recommendation 1.5.2 recommend that patients are given appointments to attend multidisciplinary MND clinics every two to three months. At the time of the questionnaire, 56% of patients were offered appointments within the timescale, although this falls short of the 100% recommended; all patients indicated that the timeliness of their clinic appointment was either appropriate or mostly appropriate and only 4% of patients had requested an earlier appointment. Unfortunately, due to the high numbers of people affected with the condition, more people are requiring clinic appointments than there are appointment slots available.

Another key question related to whether a respiratory physiotherapist presence was required at the clinics. Initially 44% of patients indicated they would like to see this specialist, with 7% preferring to be visited at home.

Further research was carried out by the respiratory physiotherapist and discussions were held with therapy managers to decide on this aspect. The decision was made for the respiratory physiotherapist to attend both clinics instead of the neurological physiotherapist for the following reasons: the respiratory physiotherapist covers all areas within the health board; thus, having a better knowledge of the patients, she also has general training and can assess physical needs or refer on to appropriate services; in addition to being able to reduce the amount of home visits. This was considered therefore to be more effective to both patient and the health board.

The questionnaires indicated that 100% of the 26 people who completed the survey were able to discuss all of their concerns, that they understood everything that was discussed and that their views were being listened to.

The feedback from the patients relating to the clinics was very positive and additional comments included ‘All the people we saw were great and respectful’, ‘Everyone has been helpful and friendly’, ‘Well co-ordinated’, ‘Very pleased each time I have attended. They always act on what has been discussed’ and ‘People are extremely understanding and willing to help me’.

This provides qualitative evidence that staff members were adhering to the NICE guidance relating to people being given the opportunity to address all their MND related problems during their clinic appointment as well as adhering to the MND Charter’s statement concerning the right to be treated with dignity and respect.

This has enabled the professionals involved to learn that the perceptions from the people with MND who attend clinics, view the team in a very positive way and that the level of care provided is of a high standard and is valued by those attending. This has provided a benchmark of professional behaviour that needs to be maintained and monitored by each member to ensure patients continue to feel valued and respected.

Although work is still ongoing to obtain a dietetic and SLT presence at clinic, further meetings are being planned to discuss ways that this can be achieved. However, the difficulties with the current referral process and access to timely assessments from these services had been highlighted and a more streamlined triage and assessment process for patients with MND has been implemented as a result.

Having respiratory physiotherapy input has proved beneficial due to the dual input that can be provided to people attending clinics, as well as the good communication links that have been established outside of the clinic appointment. This will continue to be monitored by the staff member involved to see whether attending the clinic continues to be an effective use of her time and is of benefit to the patient.

The rates that patients saw the different specialisms varied, but 96% of the 26 patients audited saw everyone they expected to see. 15% of patients were aware that a particular professional would not be present, and the same number reported that they would not have attended had they known

As a result of the survey, an area that has changed is where a professional would be unable to attend, the relevant staff member would provide a colleague to cover. Where this was not possible and advanced notice was known, the patients are informed prior to their accepting an invitation to attend. Where there has been short notice absence, patients have been informed on the morning of the appointment and given the opportunity as to whether they still wish to attend.

In order to address the issue of over capacity, an additional venue has been located in the north area which could accommodate an extra clinic on a three monthly basis. This would enable the pressure on the other two clinics to be reduced as well as being more geographically accessible to specific patients in that locale. Discussions are currently taking place to ensure that representatives from each of the specialisms can commit to providing this service.

As guidance to be able to carry out a similar audit of a clinic environment, the most useful starting point would be to study the guidelines and policies at the outset. This will ensure that there is clarity of vision as to what the standards are that need to be measured against.

Another key learning point would be to discuss the areas that other professionals were keen to explore. This would mean that all team members would be invested in the audit at the start without the possibility that they may feel that their roles or activities are being questioned.

As the collection of data was far more successful at the clinic where the auditor was present, a key learning point to consider for future projects would be to ensure the auditor attends both clinics initially to encourage all staff to be made aware of the need to encourage patients to complete the forms.

If a clinic is in the early stages of being set up, a visit to an established clinic may be extremely beneficial. This would enable the auditor to observe different practices and to see whether the relevant guidelines are being adhered to in different organisations. This will provide good background information to compare and contrast against the clinic requiring to be audited against. This may help to provide appropriate focus to be used in the compilation of questions.

Having access to other questionnaires, surveys and audit tools would be beneficial to help decide what would be the most appropriate data collection method for the audit in question. Also reading other surveys can also ensure that the questions that are planning to be used are the most effective and relevant ones to obtain the information that is required. A sample survey would be a good opportunity to alter the questions if they are ambiguous or irrelevant.

Another key area that would be useful to consider is the support available. Access to clerical support such as data inputting should be identified early in the audit process and prior to the questionnaires being compiled if possible. As this is a key element in the audit process, this could delay the audit report if none available.

Allowing the audit report to reach a wider audience can ensure that stakeholders and associated organisations are aware of evidenced research and of best practice. In this instance, this report was presented at a meeting to the neurologist, his peers and managers, to demonstrate effectiveness and satisfaction levels of current clinics with a view to their providing support and consultant time for a third clinic