Interview with Dr Ian McPherson OBE: 'We are all so different'

6th November 2018

This article is taken from our October issue of My Life magazine. You can read the whole magazine here, or to subscribe to receive a free copy via email or post please sign up here.

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Shortly after being diagnosed with HCM in 2011, Dr Ian McPherson OBE became a Cardiomyopathy UK Trustee. We were lucky enough to have an interview with him about his condition and his interest in improving support for the psychological needs of people living with cardiomyopathy.

Dr Ian McPherson OBE became a member of Cardiomyopathy UK shortly after having HCM diagnosed in 2011. A Clinical Psychologist by professional background, he has had extensive experience of healthcare from holding senior clinical, managerial and policy implementation roles in the NHS. Since finishing full-time employment, he has been a trustee, non-executive director and adviser with a number of national organisations across the statutory, independent and voluntary sectors. This has given him an appreciation of the increasing value of patient focused organisations such as Cardiomyopathy UK in ensuring both patients and professionals get the information they need and work together to develop services.

How did you become a clinical psychologist and why?

I first became interested in mental health because I experienced my own problems in early adolescence and came into contact with mental health services. It was not a particularly positive experience, but I thought I might be able to learn more and so I did my undergraduate training in Psychology and went onto do my postgraduate training in Clinical Psychology. I then worked as a clinician, researcher and trainer before moving on to other roles in mental health services in the NHS at local, regional and national levels.

How much does cardiomyopathy affect a person’s emotional wellbeing and their ability to manage their condition?

From surveys undertaken by Cardiomyopathy UK in 2016 we know that over 50% of people living with cardiomyopathy report that it has an impact on their emotional wellbeing a lot of the time, with only 8% saying it had no impact.

The way this affects people varies considerably, but we know from research on other long-term physical conditions that clinical levels of depression and anxiety can occur in around one third of those affected.

The survey also showed cardiomyopathy can have a significant impact on the lives of the family, friends and carers of the individual with the condition. 

How did you feel after you were diagnosed with HCM in 2011?

I was somewhat surprised but not shocked to receive this diagnosis, perhaps because I was relatively symptom free at the time and had not previously linked cardiomyopathy to sudden cardiac deaths in two members of my family. However, getting my diagnosis in my 60s probably meant that it had less impact on me than it might have on a younger person, or a person who had family members who might also be affected.

Why is it difficult for people to discuss their emotions with others?

Many people report being reluctant to talk about the emotional impact to their family or friends because they don’t want to worry them more and the same applies to family members not feeling able to discuss this with the person with the condition. Unfortunately this can create a situation where the issues are impacting on everyone but no one feels able to raise this.

People also are often reluctant to raise emotional impact with doctors or other professionals as they assume that these people are only there to help with the physical aspects of their condition. They feel that they should not raise these issues unless the professionals do so. However, our survey found that most patients had never been asked about the emotional impact of their condition by any professional either in cardiology or primary care.

What are the barriers and opportunities for good psychological support?  How could things improve?

People tend to be cautious about talking about how they are affected because they may see this as a sign of weakness rather than something that it is a very understandable response to living with a condition that is potentially life threatening.

Cardiology professionals may be reluctant to raise emotional impact for fear that it will open up issues which they are not in a position to deal with in the limited time they have and when they cannot readily access psychological support for their patients.

Cardiomyopathy UK tries to help both patients and professionals recognise that this does not need to be a “no-go area” and that by discussing emotional impact, we can bring about significant improvement to the lives of patients and families

How would you encourage people to talk about the emotional impact of cardiomyopathy?

I think it helps to think of “doing unto yourself as you would do unto others” Most of us would understand if a friend was feeling anxious or depressed because they had found out that they have a serious health problem and would hope that they would be willing to share their concerns with us. We would also encourage them to speak with their health professionals who might be able to sign post them towards other forms of support if they needed this.

How important is the role of Cardiomyopathy UK in providing good psychological support to people living with cardiomyopathy?

I think one of the most important things that Cardiomyopathy UK can do is to help all of those living with the condition understand what this means for us as individuals and also for our families and others who care for us. This is particularly important when it comes to psychological support, because this is not an area that most cardiology services currently address.

We are all different, so some people may want simply to read the booklets Cardiomyopathy UK has produced on this or the articles published in My Life.

Some may prefer to discuss these issues personally on our Helpline or Live Chat services, while others may prefer to talk with those living with similar conditions, whom they meet at our regional Support Groups. Emotional impact also comes up regularly on our closed Facebook Group.

Whichever approach they use, people will find that their concerns are understood by others, many of whom may have experienced similar difficulties and who will be happy to listen and if appropriate share thoughts on what might be helpful.

What do you most enjoy about being a Cardiomyopathy UK trustee?

I have been a Trustee with quite a few charities, but what stands out for me in Cardiomyopathy UK are the qualities and commitment of my colleagues on the board. They all bring different knowledge and skills from varied professional backgrounds, but I think the fact that each of them has had personal experience of the impact of cardiomyopathy on their own lives or on those close to them, means that they understand the issues more clearly and are more passionate about ensuring Cardiomyopathy UK can help all those who could benefit from our services.