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Lesley Harrison of the AKU Society

Lesley Harrison of the AKU Society

Lesley Harrison’s role in patient support at the AKU Society has evolved over the last nine years to respond to the emerging needs of the AKU community. She talks to RARE Revolution about the vital support she provides and about the charity’s focus on empowering patients to expect fair and equal access to treatment and services

PEO series: meeting the beating hearts behind the RARE brands


How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future? 

I have been with the AKU Society since May 2012. My role came about as part of the funding for the National AKU Centre (NAC) in Liverpool and was initially focused on supporting patients in England accessing the NAC, patient identification and raising awareness of AKU. It was a new post, and I was given autonomy to develop the role as the needs of the service and patients changed. My job title has also changed a few times over the years, and I am currently Head of Patient Support and Welfare and as the title might suggest, the core of my work has the patients physical and mental wellbeing at its heart.

The role is certainly diverse from supporting AKU patients, their carers and their families, to developing educational resources, planning workshops, educating and raising awareness of AKU amongst health professionals and attending conferences. An important aspect of the role is being the patient advocate ensuring all are treated fairly, have equal access to treatment and services and empowering them to have a voice as well as challenging decisions and processes where appropriate.

Our patients are scattered across the UK and working on my own to support them at home can be difficult. I offer all our patients home support visits but fitting them all in with large distances to travel on top of my other work can be tricky. The value of these home visits cannot be underestimated, as for us it’s a clinically useful intervention, an invaluable teaching tool and an opportunity to provide support. It has also given me the opportunity to meet patients in a more relaxed and informal setting, where it is easier to talk about any personal issues or problems. In an ideal world I’d like to build a team of outreach support workers or volunteers who can visit our patients at home more often than my work and time allows me.


What does a typical week entail for you, and are there any specific projects you can tell us about?

There is no typical week for me, the work is so varied and very dependent upon the needs of individual patients. This is why I love the job so much. The difference the charity makes gives me the motivation to keep doing it, even though there may be times when the going gets tough.

One week a month I’m in the Royal Hospital in Liverpool supporting our patients as they attend the National AKU Centre. They spend three or four days in the hospital having a whole series of tests and assessments which can be both tiring and daunting, especially for those attending for the first time.

Other times I might be having a conversation with someone newly diagnosed with AKU, explaining about the condition, genetics and how to access the NAC. I’m the first point of contact for new referrals to the NAC and often found liaising between their local healthcare providers and the team in Liverpool.

I plan and run national and international patient workshops and oversee the implementation and management of patient orientated projects such as ‘Breaking Down Barriers’. I develop new information resources for patients and health professionals as well as review resources as required, such as leaflets, eLearning modules and demonstration videos. Part of this work also involves setting up and coordinating patient work groups to help develop and review patient information resources.

Lesley Harrison of the AKU Society

During the COVID-19 pandemic, we’ve had to adapt the way in which we support our patients. I haven’t until now been able to offer home support visits and the NAC was closed from March 2020 until September 2021. With their comprehensive care put on hold and access to local healthcare limited the need for telephone support to our patient group significantly increased. The cancellation of the NAC and planned surgery, limited access to healthcare and the impact of needing to stay at home led to a noticeable impact on the mental wellbeing of some of our patient group. We’ve held virtual patient workshops and a remote eight-week mindfulness course to help address social isolation and mental health during COVID-19. I’m sure in the future the way we support our patients will continue to be a hybrid mix of remote and face-to-face working.                             


What were your personal motivations to taking up a role in patient engagement?

I come from a nursing background, having trained as both a mental health nurse and a   general nurse. My mother was a nurse and seeing the satisfaction she felt each day by helping people in her job inspired my own interest in a caring profession. I knew from when I was quite young that nursing or similar work was something I wanted to do with my life.

After many years nursing I moved to the charity sector. I wanted to do something in my career that was challenging, interesting, and made a real difference in people’s lives. I’m passionate about ensuring the human and legal rights of people who may be at a vulnerable point in their lives and strive to ensure we are an advocate for our patients ensuring all are treated fairly and their voices are heard.


What makes the role of patient engagement officer important to your organisation?

Transforming the lives of AKU patients; through patient support, community building and medical research is at the heart of the AKU Society. As a patient led support group, we strive to empower all those affected by AKU; helping them understand and manage their condition, building a strong and supportive AKU community. Therefore, the role of any patient engagement officer is vitally important and at the centre of the work we do. I’m usually the first and main point of contact for patients and the link between them, the NAC and local healthcare providers. A patient’s greater engagement in healthcare contributes to improved health outcomes and they want to be actively involved so it’s vitally important that we encourage and involve them in all the work we do.


In your role, how do you ensure the patient voice remains central?

The whole of our team ensure that the patient voice remains central. We have two patient trustees who ensure patient voices are at the heart of shaping our strategy and plans and make sure we hear the patient voices to inform the development and delivery of our service.

I am in regular contact with all our patients and actively encourage them to participate in the planning and designing of any of our projects and resources as well as evaluating and providing feedback to improve what we offer, and the service offered by the NAC. We have a central group of patients who will always immerse themselves in the work that we do. However, it’s about ensuring the whole AKU community is involved and has a voice. We continue to connect with all of them, even those who find it difficult to understand or find it hard to speak up.


How do you reconcile operational business needs with elevating the patient voice?

Our operational business need is primarily about elevating the patient voice. The patient is at the heart of all the activities we undertake, whether that’s through funding research, helping them access support or providing resources to live an active and independent life.


What are the most rewarding aspects of your role?

The patients and the families I work with and forming relationships with them are the most rewarding aspect of my role. They inspire and motivate me and are the driving factor in continuing to do the work I do. To have the opportunity to make a difference to the lives of others in their time of need is a privilege. To drive change and help improve the daily life of someone living with a rare disease is what makes it all worthwhile.


What is your proudest moment in your career thus far?

There have been a few moments but the proudest by far was something that came about quite recently. Since starting in my role in 2012, I’ve worked hard to ensure equal access to services and treatment for all AKU patients in the UK, whether they live in Wales, England, Scotland, or Northern Ireland.

Unfortunately, devolution means that the NHS for all the home nations works and funds healthcare differently and, as a result, patients in Wales could not access a drug shown to be effective in the treatment of AKU. Initially this drug was only available ‘off-label’ but following an EU funded clinical drug trial, was approved for use in AKU in 2020. For the past nine years I have continued to champion for our Welsh patients to have the same access to the drug as our patients in England and Scotland. Finally in October this year after going down the appraisal process in Wales, use of the drug for Welsh AKU patients was finally approved and given ministerial ratification.

This is not the end, however, and my focus now is ensuring patients in Northern Ireland have the same access to this drug.


What advice would you give someone considering working in the rare disease space?

Working in the rare disease space is rewarding and fulfilling but it can also be hard work. You don’t always get the answers or outcomes you’re looking for and at times it can be an emotional roller coaster. Working together, rare disease groups have a bigger and more powerful voice than working alone and so collaboration and sharing experiences is important. Excellent communication is key, especially within rare disease collaborative groups. Never give up and be prepared to challenge decisions and processes that are     partisan or exhibit social disparity.


If you weren’t Patient Engagement Officer of AKU, what was Plan B?  What did your 10-year-old self want to do as a job?

When I was at school, I wanted to be a forensic pathologist but soon realised I’m a ‘people person’ and working with dead people wouldn’t be the right direction for me. Having an innate desire to help people and to care for them in times of need and when they are at a vulnerable point in their lives is what steered me into nursing. When I was nursing in the community, I spent a lot of time caring for people who were terminally ill. Palliative care is a wonderful area to work in, it’s not the sad and depressing work that people think it is. It can be incredibly rewarding, being able to spend more time with the patient and supporting their whole family. Knowing you’re helping and just being there at one of the toughest and most precious times makes it all worthwhile. If I wasn’t in the role I am now, I would be nursing in palliative care in the community or a hospice.

To find out more about the work of the AKU Society please visit;

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