The Wessex region has generally higher rates of major and minor lower extremity amputation rates for people living with diabetes.
In order to gain a greater understanding of the causes of variation the Wessex Diabetes Forum has supported comprehensive peer reviews of foot care pathways and services available. The aim of this process is to improve services across the region through sharing and learning. This blog describes patient’s individual views of their experience across the pathway, highlighting common themes.
In Autumn 2018 a peer review of foot care services was conducted across Hampshire, Isle of Wight and Dorset. Diabetic patients from both type 1 and type 2 with ongoing foot ulceration, healing ulceration and/or foot and lower limb amputation were interviewed using a discovery interview process and the findings fed back as general themes. This was prioritised as the opening element of the review by the clinical lead.
The majority of patients chose to be interviewed in their own home due to mobility issues related to foot disease. A smaller number chose telephone interview. The full breakdown of patient interviews across the region is shown below:
Each Trust was asked to provide between two and four patients following amputation and/or ulceration of the foot for interview. Patients were initially contacted by the clinician to ask permission to be contacted by Wessex Clinical Network. Patients were then called and the purpose and details of the interview discussed. Seventeen patients were contacted; all accepted however two withdrew – one due to illness, the other did not give a reason.
Qualitative interviews were used, using open questions covering key areas of the diabetes foot care pathway as prompts for discussion.
A selection of key quotes extracted from the interviews are shown in the speech bubbles at the head of this blog and below:
Some of the common themes to come out of the interviews are as follows:
Challenges for patients
Several interviewees felt there was a need for earlier access to diabetes education, with a much greater emphasis on foot and the likelihood of foot problems. The feedback also highlighted the need for greater awareness of familial history of diabetes and the potential implications of this. A further area of importance for patients was the long-term effect upon their wider families, particularly on the mental and physical health of their carers.
Employment and footwear
Many of the patients interviewed had been involved in manual jobs or multiple manual jobs. This often necessitated wearing steel toe capped ‘protective’ and steel soled boots, which are a significant additional risk to the diabetic foot.
Employment and diabetes care
Patients described having busy working lives (several were self-employed) and additional time and security pressures that led to the importance of health appointments being secondary. Due to the changing nature of employment and greater levels of self-employment, many patients felt that it was more important to keep working than to take unpaid time off and risk losing work contracts for health appointments.
Several of the patients interviewed regularly worked away from home on a contractual basis. This was another reason why health appointments were often not met on a regular basis. One patient who is now blind described trying to dress an ulcer and provide self-care whilst working away and abroad. He reflected on this now being unable to work in the job that he enjoyed and missed his work colleagues and the social interaction this gave him.
Advice to employers on footwear and diabetes
One patient felt he was not keen to wear specialist shoes as felt they were ‘unfashionable’ – following discussions with his podiatrist, he has now agreed to wear them.
A number of the patients interviewed had worked on building sites for 30 years or more, and this required wearing heavy duty protective footwear with steel capped toes. The rubbing of footwear and neuropathy combined lead to further problems.
Many of the patients interviewed were now unable to work in their former jobs due to incapacity created by foot ulceration and amputations. Some were forced to take early retirement from professions in which they had enjoyed working for many years with the consequent loss of social interaction and purpose derived from working life.
Depression and isolation were reported by several of the patients interviewed, which required medication and counselling. In one case self-harm was reported; this was fed into primary care and the necessary help was offered.
Family and/or carers
Wider effects were felt on the family; in one case the patient’s wife had also given up her work early to care for her husband due to diabetic foot ulceration. The physical and mental health issues of carers is well documented and also relevant to this group of patients.
Lack of early information about the serious effects of foot disease and importance of foot care
Some patients felt there should be more stress on this from health professionals; some patients felt they had been told about the serious nature of foot problems, however, at that point in their lives they were not sufficiently ‘tuned in’ to the implications.
Need for more powerful messaging on the implications of diabetes and diabetic foot disease
Diabetic related foot disease is associated with modifiable risks of amputation and premature death. Important messages need to be delivered to employers that provide footwear for manual workers.
Similarly, messaging must encourage patients to take greater responsibility of their care, using language that is easy to understand, with practical tips on how to achieve this.
A summary of the shared learning from these patient reviews is illustrated below: