Monitoring the
public health impact of health checks for adults with a learning disability in Wales -
User Experience
Rport of the joint National Public Health Service and Welsh Centre for Learning Disabilities project group, based upon feedback from All Wales Focus Groups ; developed in conjunction with All Wales People First
Dr. Jonathan Perry, Professor Mike Kerr, Professor David Felce, Stuart Bartley, Judith Tomlinson, Dr. Sean O’Reilly(October 2008)

Contents

Page
Summary / 3
1 / Background / 4
2 / Methodology / 4
2.1 / Sample / 4
2.2 / Meeting format / 5
2.3 / Analysis / 5
2.4 / Results / 6
3 / Before the health check / 6
3.1 / Invitations / 6
3.2 / Explanations / 6
3.3 / Confusion / 7
3.4 / Appointments / 7
3.5 / Access / 7
3.6 / Reception / 8
4 / During the health check / 8
4.1 / Communication / 8
4.2 / Process / 9
5 / After the health check / 10
6 / Status of health checks / 11
7 / Improving health checks / 11
7.1 / Awareness raising / 11
7.2 / Invitations and appointments / 11
7.3 / Accessible advice / 12
7.4 / Process / 12
7.5 / Post health check / 13
8 / Conclusion / 13

Summary

  • Overall, participants in the focus groups appreciated the importance of health checks, valued the opportunity to have them and were positive about the experience.
  • Familiarity was a more important concern for people than gender with respect to choice of doctor. In general, respondents felt that GPs communicated clearly and did not use jargon.
  • The majority of participants were positive about receptionists at GP practices commenting that they were aware of special needs and very accommodating.
  • Access to GP practices and the accommodation and physical layout was generally perceived to be satisfactory.
  • The interval between the health check and follow-up hospital appointments could be lengthy.
  • There was uncertainty and anxiety about what would happen during the health check process in the period between receiving the invitation and attending for the check. (Generally, anxieties were alleviated once the person was having the health check).
  • Despite limited numbers involved in the focus groups feedback suggests the Health check process could be improved by:
  • Greater standardisation of the invitation process including mechanisms for informing everybody of their entitlement to a health check. (There is a need for clarity regarding where responsibility for this lies).
  • Clear and accessible explanation of the purpose of a health check and what it entails
  • GPs making it clear that health checks are repeated annually
  • Ensuring that, where referrals to other health professionals arise from the health check, the reasons for these referrals are made clear to patients. Similarly, the professional to whom the person is referred should receive all relevant information about the person in advance of the consultation.
  • Ensuring participants are kept informed at all stages of the health check process

  1. Background

Since April 2006 adults with learning disabilities in Wales have been entitled to receive an annual health check from their general practitioner. During the scheme’s first year 2910 people received a health check. This report presents the findings of a study which explored the views of a sample of health check recipients about the process of having a check.

  1. Methodology

A focus group methodology was adopted. Active participation in a focus group necessitates a reasonable level of language ability. Inevitably this restricts the pool of potential focus group participants because problems with comprehension and expression are common amongst people with learning disabilities. However, focus groups have a number of advantages over structured interviews for this client group. For example, they may be perceived as less threatening and more conducive to open discussion and they are less likely to be based on an agenda set by researchers. Focus groups on health issues have been used successfully with this client group on three previous occasions. The methodology was approved by the South East Wales Research Ethics Committee.

2.1.Sample

The intention was to recruit a sample of five groups of 20 people with learning disabilities from across Wales. Clearly, a sample of 100 people is not representative of the 2910 people with learning disabilities who received a health check. However, in order to maximise responses to invitations to participate in the study, people were recruited from the 13 unitary authorities known to have had the highest uptake of health checks. To recruit the sample researchers collaborated with All Wales People First (AWPF), an organisation which coordinates a number of local self advocacy groups throughout Wales. Advocacy officers at people first groups in each of the 13 areas invited people who had had a health check to attend one of the five focus group meetings. The locations of the five focus group meetings, together with the areas in which participants lived and the number of people with learning disabilities at each meeting, are shown in Table 1.

Table 1: Focus Group Venues and Constitution

Venue location / Areas represented / Number of participants
Cardiff / Cardiff, Vale of Glamorgan, Rhondda Cynon Taff / 6
Brecon / Brecon, Newport / 6
Bridgend / Bridgend / 5
Narbeth / Ceredigion, Swansea, Carmarthenshire, Pembrokeshire / 11
Conwy / Denbighshire, Flintshire, Gwynedd, Wrexham / 11

In total 54 people attended the meetings of whom 39 had learning disabilities (17 women and 22 men).

The sample size was lower than anticipated. There are a number of possible reasons for this. First, the inclusion criteria (e.g., experience of a health check) were restrictive relative to previous studies in this area. The principal discussion topic was similarly narrowed compared with previous qualitative studies and might have been a disincentive to participation. In addition, invitations to participate in the study coincided with the end of the financial year and it was reported that anxiety about the continued funding of local people first groups might have had an impact on the willingness of group members to take part.

2.2.Meeting format

Meetings were scheduled to last for about three hours and were followed by a lunch. Participants were given an agenda which was written in an accessible way and accompanied by pictures. This was explained by the researcher who also described the purpose of the project and what would be involved, before distributing consent forms for people to sign. Potential participants were given an assurance of anonymity and confidentiality. This procedure had been sanctioned by the research ethics committee.

Focus group discussions were split into three main themes: before, during, and after the health check. If necessary, groups were subdivided so that there were no more than six people per group. Each group was facilitated by a people first advocacy worker who had been given a list of prompts/discussion topics to be used if the conversation faltered.

The views expressed were recorded onto flip charts so that everyone present could see what was being written down. The information recorded is a combination of direct quotes and summaries of group opinions. The role of the researcher was not to participate in the discussion but to ensure that the notes written on the flip charts reflected accurately the content and meaning of what had been said. Carers and supporters contributed to the discussion very little and their comments were not recorded.

2.3.Analysis

After each meeting a researcher extracted emerging themes from what had been written on the flip charts during the meeting. Where possible, direct quotations were transcribed to illustrate the points being made. A second stage was to combine the notes from the separate meetings and produce a balanced report of the issues which had been discussed.

2.4.Results

The results are described under the three headings used in the meetings themselves: before, during and after the health checks. There are a number of caveats. First, there was a lack of consensus about what a health check is. This was manifested in a lack of discrimination between health checks and other visits to health professionals. A combination of having a learning disability and the interval between the health check and the focus group meeting which, in some cases, was in excess of a year, meant that some people had difficulty remembering in detail what happened at the health check. A third note of caution is that discussions tended to be more structured than is ideal for a focus group. Again, in part this is probably a consequence of the relatively complicated nature of the subject area coupled with the fact that the discussants had cognitive deficits and therefore, tended to rely more heavily on facilitators’ prompts. Finally, research evidence suggests that as with the general population, people with learning disabilities are more likely to report satisfaction than dissatisfaction. Indeed, following several of the meetings, support workers who had accompanied people expressed surprise at how positive the person’s comments had been.

  1. Before the health check

3.1.Invitations

Most people received an invitation to have a health check from their GP. Typically this was in the form of a letter but occasionally people were invited by telephone and some people received a letter and a phone call. In one local authority everybody registered as having a learning disability was sent a letter informing them of their entitlement to a health check and asking them to contact their GP to arrange it.

3.2.Explanations

The invitation letters sent by GPs generally included some explanation of what a health check is. These varied in detail. For example, some letters simply stated a date and time to attend the surgery. At the other end of the scale was a person who said that after receiving the letter she knew that the health check was a “review of blood pressure, weight, medication” and that she should not eat before the health check. Typically, for those people who lived with support from others, the person providing the support explained about health checks in more detail. Ironically, it was often the more able people who lived relatively independently, who were least ‘prepared’ for the health check. Although it might have been related to the way the study sample was recruited, local people first groups were cited most frequently as the main source of information about health checks. One individual reported having received an explanatory ‘picture letter’ from his community learning disabilities team. Further explanation of what would be involved was often provided by the nurse or GP immediately before, or during the health check.

Despite the types of explanation mentioned above, many participants reported uncertainty and anxiety about what would happen. Generally, anxieties were alleviated once the person was having the health check, but they were a cause of concern in the period between receiving the invitation and attending for the check.

3.3.Confusion

Following on from the previous topic, and as mentioned in the caveats at the start of the results section, it was clear that there was considerable confusion about health checks – even after the event. To a large extent this might be attributable to the time that had elapsed between the check and the focus group meeting together with routine ‘non health check’ visits to the GP in the intervening period. However, there were a few instances where people had attended the focus group thinking they had received a health check but it became clear during the meeting that, in fact, they had not. For example, one man reported that his invitation for a health check had come from his local Jobcentre Plus. It emerged during the conversation that what he had thought was a health check was actually a request from the DWP for him to visit a GP as part of an assessment of his eligibility to receive a disability living allowance.

3.4.Appointments

Participants had either been allocated an appointment by the GP or asked to contact the surgery to make an appointment. Whichever approach had been used, people said they wanted appointments to be at times convenient to them. Appointments which clashed with day services or other activities were particularly unpopular. People wanted flexibility in making appointments and in general, they reported that surgeries were accommodating. The jury seemed to be out on automated telephone answering systems with some people finding them straightforward to use, and others finding them confusing. Several people reported a preference for visiting the surgery to make an appointment, rather than telephoning. Arranging appointments was not an issue for people who were more dependent on others for support.

With respect to choice of doctor, familiarity was a more important concern for people than gender. In general, participants said they preferred to have the health check conducted by their own doctor regardless of whether this was a man or a woman.

3.5.Access

In general, people reported no difficulty travelling to their doctor for the health check. As with making appointments, the people who were most dependent on others for support had the least difficulty because if they were unable to travel independently someone would take them, or at least accompany them, to the surgery. Those who were able to travel independently were more likely to report problems with access, for example one man said that the extent to which travelling to his GP was problematic.

“depends on buses. Fares have gone up and it’s twelve pounds for a taxi”.

However, for most people, GP practices seemed to be within easy walking distance.

3.6.Reception

The vast majority of participants were positive about receptionists at GP practices commenting that they were aware of special needs and very accommodating. A few people reported difficulties with receptionists, but this was the exception rather than the rule. One thing that people disliked was having to fill in forms.

The length of time which people waited before their appointments varied from a few minutes to a couple of hours. Clearly, no one liked having to wait too long. A few people had part of the health check done by a nurse and part done by a GP and, effectively, had to wait twice. This was unpopular.

Prompt: “Did you have to wait long to see the doctor?”

Response: “Doctor sends time for an appointment, but once you get here you wait for hours on end…”

Some practices used a supermarket delicatessen style ‘ticket system’ and some had a computerised self-service ‘check-in’ system. Both of these were viewed as acceptable by those participants who had experienced them. One person objected to waiting too long on the grounds that they felt guilty about the accompanying support worker having to wait as well – especially if it meant that the support worker had to work longer than their normal shift.

People were positive overall about the standard of waiting rooms although there was some call for more accessible literature, chairs rather than benches, and more room for wheelchair users.

Prompt: “What was the waiting room like?”

Responses: “... quite clean”; “can’t understand the leaflets, don’t understand what it is”; “Some are ok, some are a bit cramped”.

  1. During the health check

4.1.Communication

In general, respondents felt that GPs communicated clearly and did not use jargon.

“The nurse spoke to me properly and the doctor spoke to me properly. It was alright”

“They used small words”

A minority of respondents were uncomfortable with being questioned about their health.

“...it was all personal. They ask you loads of questions. They were very difficult”.

One person commented that communication by doctors tended to be directed towards carers. In a similar vein, some participants felt that the person accompanying them had done too much of the talking. In response to such comments other group members said they had not experienced this but that they would be annoyed if they had.

Most people were given opportunities during the health check to ask questions and they felt that the doctor listened and seemed to understand. A minority of participants had not had a chance to ask questions.

Prompt: “Did you have the chance to ask questions during the health check?”

Responses: “No, the doctor just asked me questions”; “[my carer] was all yapping for me”; “I suppose people, in a way, are shy”; “I think it’s really bad when someone speaks over the disabled person”; “It’s your appointment so basically you should be able to say what you want to say”.

4.2.Process

Most people were happy with what happened during the health check. Several people said that each procedure (e.g., taking blood pressure) was explained to them beforehand. The vast majority felt that plenty of time had been allowed for the check and that it didn’t feel rushed.

“She gave me time to think about it”; “They take extra time to find out what the matter is”.

Areas which caused anxiety in several individuals were blood tests, breast examinations and cervical smears. Apart from this, most people felt calm about the process.