‘I don’t take on roles for a badge… I just want to make a difference’

Dr Robina Shah – consultant applied psychologist, expert in psychosocial medicine, and former High Sheriff of Greater Manchester – talked to Ella Rhodes about her work, life and values.

My parents grounded myself and my siblings in having the right values. That has helped me to focus, within psychology, on how the value base informs how you practice, how you develop as a professional, and how you begin to capture the very essence of life. Those things excite me.

I always wanted to do clinical, social and developmental psychology so I did all of those as my third year specialist subjects at the University of Manchester. My father had been instrumental in positively influencing me towards psychology. He read psychology as one of his subsidiary subjects when he was doing law and philosophy… I enjoyed our conversations and thought it was perhaps something I should explore further. He said ‘Robina, you have such a creative mind and psychology is very open to that… whilst it might prompt you to ask lots of questions, it will also prompt you to understand what’s behind those questions’.

Finding a reference point
I started my career within community psychology and began exploring what was happening to children from a South Asian background who had learning disabilities, and their families. The area was a blank page – we had no reference point. In order to shape and inform policy and practice and service delivery in the right direction, we need that reference point.

I was observing a session at a school, it was breaktime and the children were playing outside in the playground. I noticed two children sitting in wheelchairs, completely isolated, who happened to be from a South Asian background. A series of questions were going through my mind… I thought, why is nobody interacting with them? What are the circumstances that have led service providers to assume they don’t want to interact or their families don’t want to access respite care or short-term support, for example? Then I came across certain views and realised that the reference point for understanding the needs of those children were based on unchecked explanations founded on stereotypes that informed a person’s perception of what they thought was needed. This became my first research study.

I started off with 12 families who were supported by Manchester Social Services. I looked at the barriers for these families in accessing support services, asking parents about their attitudes towards disability, their awareness of services which could help them and their perceptions of those services meeting their needs. The research also addressed the role of cultural stereotyping in social work practice with Asian families. Often families weren’t asked certain questions because an assumption was already made that they wouldn’t want to do that because of X, Y and Z – usually the explanation was a cultural explanation.

I had just finished university when I got involved with this area. I had my research published and turned it into a comparative research project that looked at a similar cohort of families in Birmingham. That developed into a book, called The Silent Minority. It provided evidence of very specific differences compared to the experience of white families living in similar circumstances, many of the studies in my literature review suggested that South Asian families living in the UK generally experienced substantial inequalities, discrimination and disadvantage. These studies also identified a link between these factors and the process of cultural stereotyping and discrimination, resulting in South Asian families experiencing reduced satisfaction with services and lower levels of access and utilisation of services.

As a result of all of this work I was awarded my MBE in 2003 in recognition of my academic research and for breaking new ground. It was a tremendous thing, humbling and unexpected.

More than a diagnosis
The psychosocial medicine aspect of my work came into much more focus during this time. When I was interviewing these families I identified communication as a specific area of professional practice that impacted negatively upon parents if it was weighted heavily towards the medical model of disability.

One of the principal areas of distress for many families, irrespective of their ethnicity, is the circumstances related to the time when they first find out that their child has a disability. I started to think about what that disclosure practice looked like and why it was such a poor experience. Families would say that the doctor or nurse who gave them the information treated it as a one-off… there was no thinking about how parents would cope or manage this situation in a positive way. Depending on how you say it, the dependency the parent has on the explanation they’re given becomes framed for life in their mind. If it’s given in a very negative way – if you don’t refer to the child by name, or touch the child, or demonstrate or show kindness towards the child – unconsciously you’re advocating the position that some people in society hold about difference. I’ve heard this from a whole range of families… comments like ‘well, put it this way, your child will never be Prime Minister’… negating the child’s ability from the onset without really knowing anything more about the child other than the diagnosis they’ve been given.

If you put a psychosocial lens on what you’re looking at, you begin to understand and value  the family’s living circumstances and lived experience, you begin to understand how that shapes and influences their lives and how they think about the future, and you also begin to consider the lack of education and training of the healthcare professional who may not be aware of their impact on others. The challenge for health care professionals is understanding how best to address these issues to improve the disclosure process. How do you convey the diagnosis of an impairment which may lead to a disability, in a language or conversation that the parents will understand? In order to make the best of what is a very difficult conversation you should try to understand the family and their circumstances. From identifying that gap in the research, I then did a study looking at disclosure practice, funded by the Foundation for Learning Disabilities, which was published as a training guide called ‘Sharing the News’.

Emotionally challenging
Barnardos asked if I’d be interested in doing some research on young carers from South Asian backgrounds in 1999, called Caring Alone. I found working with young people, interviewing people as young as 11, was challenging for me emotionally. I was very saddened to listen to their stories and hear about their lived experience. But understanding the impact of that care and the isolation experienced within the school, or within college, was important because people generally didn’t know. Young carers don’t give themselves the label ‘young carer’, in their words they were ‘just looking after mum or dad – it was the natural thing to do’. We still have young people who are in those roles and we still haven’t fully assessed the impact or implications it creates for them in broader life.

In 2000 I became the chairman of the Board of Directors of Stepping Hill Hospital… the youngest to be appointed and the longest serving. In that role I was asked to lead and manage the merger between what was the community healthcare trust with the acute hospital to form one organisation. Psychology was really important in that role because it was about understanding people, their aspirations and fear for the future. You needed to fully understand the impact of change on those individuals on a whole range of different levels. In 2004 we were invited to apply to become a foundation trust and I led that process. Around that time I was invited by the Chief Executive of the NHS to sit on the National Leadership Council, the National Equality and Diversity Council and I was elected by my peers to represent them on the North West Leadership Academy Board.

The most recent publication I was involved with was on disability hate crime published by Jessica Kingsley in 2014. This built on my work with the Independent Cross Government Advisory Group on hate crime. As the Editor I brought together a group of people to talk about various aspects of disability hate crime using their professional and specialist roles. In the preface and in my chapter on health I wrote two poems to illustrate the emotional context of these cases. I wrote one poem about the tragic deaths of Fiona Pilkington, who killed herself and her daughter Francecca Hardwick, they were being abused routinely by young people in the community. It was really horrific. I also wrote a poem in the preface to illustrate the lack of awareness about disability hate crime in society. Sadly for many people with learning disabilities, hate crime towards them in the form of verbal abuse, physical harm is an everyday experience and we as a society must do something about this.

The Doubleday Centre
When I finished at Stepping Hill I wanted to get back into academia because I enjoyed teaching and I wanted to develop my work within person-centred care and patient experience. I came back to the University of Manchester and was asked to lead on patient and public involvement; I led the establishment of the Doubleday Centre for Patient Experience set up in a partnership model between patients, carers, students and staff. We’ve been really lucky in that we’re seen as world leaders.

I direct the Doubleday Centre, do teaching with medical students in clinical communication skills, person-centred education, compassionate care, values-based practice and the NHS constitution. The Doubleday Centre hosts the medical school’s public and patient involvement strategy. We recruit people from the general public, including those with an interest in medical education, or who have some experience of either being a patient having been a carer, and those who generally have an interest in shaping the education of our future doctors. They help in the direct teaching of medical students, they sit on the programme committee which provides oversight of the whole MBChB (Bachelor of Medicine and Bachelor of Surgery) programme, on the curriculum committee and many more, they also take part in medical student admissions.

In various national roles I’ve contributed to more than 40 government publications. I contributed to the formation of health care policy as a member of the standing commission at the Department of Health. I was also involved with Quality Protect which informed some of the work around the Children Act. In 2009 I became a trustee of the Royal College of General Practitioners (RCGP), a position I held for seven years. In my final year of that I took up the chairmanship of the UK RCPG Patient and Carers Partnership Group where I was observer to the council of the RCGP, made up of about 75 GPs across the UK. I’m now an honorary fellow of the RCGP and also a President elect of the Royal Society of Medicine’s Medicine and Society Council.

High Sheriff
I was appointed as High Sheriff of Greater Manchester in 2018 and before that, in 2006, I was appointed a Deputy Lieutenant which is an appointment by the Lord Lieutenant. High Sheriffs are personally appointed by the Queen and when I was asked to do it, I had to sit down! It’s such a huge privilege, a very great honour. Then you think ‘how do I do service to this historical, highly esteemed office?’ So I set up Team High Sheriff. In my year I wanted to promote and enhance young people who were already contributing to the betterment of society, but also to identify those young people who just needed help, support and someone to listen to them. I delivered a whole range of different events which were co-facilitated by young people for young people. That journey was so rewarding, linking young people with my network, trainers and employers – the success of Team High Sheriff led to my appointment as Chief Ambassador to Mayor Andy Burnham’s Meet Your Future and Bridge GM, which uses a similar model, providing work experience, funded apprenticeships and mentoring to young people across Greater Manchester.

Looking to the future I’m just hoping to continue pursuing those things that have mattered to me from a very young age – that’s been a consistent theme in my life, that value base and identifying and working through what is a blank page and populating it with positive transformational change. Secondly I want to continue to support young people. I do a lot of voluntary work, I also sit on the Women’s Football Board and the Disability Football Committee nationally at the FA. And locally at Manchester FA I chair the Inclusion Advisory Board. I am also the UK Health Service Ambassador for National Emergency Services Memorial, my role is to ensure that across the UK we value, thank and acknowledge the important part our emergency personnel play in keeping us all safe.

I don’t take on these roles for a badge, I just want to make a difference. I want to be part of transformation and I want to make change good for everybody in the best way I can. That goes back to my values that ground me as a person and in the psychology domain.

The way that I’ve been brought up and the things that I believe give me my moral compass. I try to align what I do, in terms of how I behave, with what I truly believe in – wider humanity, and engaging with issues for the betterment of society, particularly with those individuals who may be seen as outliers.

Just as my parents have been great companions through my life, so has psychology. I believe psychology prepares you personally and professionally for life. It helps us to manage and cope with change, encourages critical thinking, inspires creativity and equips us with the ability to unpack the world around us, the ability to explore and innovate. In my experience psychology enables you to travel across and within professional constructs, in a variety of careers that include science, academia, research, technology, law, health, education, social care and even football.

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