Who Cares for the Carers? : NHS Disability Summit 2022

Who Cares for the Carers? is a really good question. We are bombarded in the daily news with stories of the NHS in crisis, failing A&E departments , post covid lengthy waiting lists, winter pressures (well all year round pressures if the truth be told!) and a mass exodus of hard working dedicated staff who have simply burnt out from working under extreme pressure for so long. Have we become de-sensitised by these daily headlines ? I wonder ?

After dedicating 34 years of my life to the NHS, working as an OT in the unique field of supporting staff with long term health conditions and disabilities, it seemed for me to be a battle too far, because I had disabilities of my own to contend with (Dyslexia and Hashimotos -an autoimmune thyroid disorder ). I was also a parent carer of a young person with autism and learning disabilities, navigating special educational needs system and transitioning into adult social care. You could imagine my"tanks"were pretty full anyway.

However, for those 34 years I continued to do my best to serve "my fellow NHS staff " in the ONLY way I knew how, (often at great cost to my own health and wellbeing at times) with good old fashioned determination, a very strong work ethic, dedication, enthusiasm, humour, a strong sense of duty and service to others. However, as predicted, I ran out of steam and burnt out ! In order to preserve my own health and wellbeing, I sadly chose to leave my beloved NHS and go independent . Why ? What happened ? What could have prevented me from leaving? - I was a staff member who was very experienced, knew the NHS system in all its "glory", acutely aware of its many issues but also knew of some very simple and practical solutions to help NHS staff feel valued?

According to House of Commons library UK Disability statistics: Prevalence and life experiences (published July 2022) estimates 14.6 million people living in the UK had a disability as recorded in the financial year 2020/2021. This represents 22% of the UK population. So with the NHS being one of the largest employers in the UK, you don't need to be a mathematician to work out many of those 14.6 million people are likely to work in the NHS.

Disabled staff working in the NHS must be well looked after then? you would think so ? A caring organisation must be able to take good care of their staff because they have the "know how" . Surprisingly not necessarily. There are pockets of excellent practice but equally pockets of poor practice , poor attitudes and mis -information or at worse, little or no adequate processes for staff to get the reasonable adjustments they need in a timely manner. Access toWork (the DWP's hidden secret) can be just that a secret ! How many NHS staff have access to a clear published processes to help them confidently apply for Access to Work? How many NHS managers know how to coordinate the reclaim the cost sharing element of Access to Work claims ?. How many NHS Trusts have a protected budget for Access to Work and other reasonable adjustments requests? Are the IT teams familiar with Dragon software and other assistive technology ? Are they compatible with the NHS firewalls ? Do they know how to upload this specialist equipment and are these software providers on the "preferred providers list" for procurement? Also for consideration are the NHS recruitment and onboarding processes inclusive as the disability confident badge proclaims ? How many people with learning disabilities and autism work in the NHS ? How many NHS staff members have their own support worker and how are they managed in the closed and secure environment of the NHS when they are not directly employed by the NHS ?

What about our future staff ? Students training to be our next doctors, nurses and allied health professionals are familiar with student disability support allowance and processes and are generally aware of such support but that stops when they enter the world of work.Then what ?

I feel the NHS should be an exemplar employer for all things disability related, after all its in the business blue print.. or is it ? The Medical model is intrinsic in its delivery within the NHS. People expect to be cured /fixed when they attend the NHS. Many are very grateful for the medical model intervention when they are ill. However, what happens to the staff who reach the end of the medical intervention line and need to "manage " their health condition or disability in the long term?. How do patients feel when they see their Doctor in a wheelchair ? or meet their OT who is blind or their nurse who is a bilateral hearing aid wearer, lip reading every minute of every day? These are the visible disabilities but what about the nurse with dyscalculia and dyslexia who is leading the drug round ? What about the medical social worker who has a Bi-polar and seasonal affective disorder or the orthopaedic consultant who is Autistic ? These are not so easy to spot by patients or NHS colleagues.

At todays's NHS Employers Disability Summit 2022, run by NHS Employers and Health Education England I had the privilege of listening to a wide variety of speakers discussing these very issues. I also had the responsibility of reporting on 2 exiting pilots using the Empowerment Passport, a tool I have developed and researched over the last 12 years, to offer as one possible solution for the challenges of understanding, embracing and accepting diversity and inclusion in today's NHS workforce. Based on my own extensive experience of working in the NHS, applying new inclusive legislation (DDA 1995 and then the Equality Act 2010) to my clinical OT practice, I created the tool to promote the holistic bio-psycho-social model of support and to for it to be used in different work environments. My unique NHS experience as a Disability adviser, ( plus personal insight of the lived experience of disability and a carer), provided me with an understanding to explore what works well, what doesn't, what is important to an individual and what is important for an individual to enable them to manage their own health and wellbeing needs in the workplace.

Additionally, I have supported numerous managers and HR Teams to carefully consider and justify agreed reasonable adjustment for their disabled staff members often against the backdrop of balancing their operational duties of service delivery and targets ... and ..(dare I say it) deal with "adjustment envy" something born out of others' perceived preferential treatment of a disabled staff members. I have witnessed this first hand, always learning, always curious, but appreciate it can be a very tricky balancing act to manage with high expectations on all fronts.

My experience has taught me 2 things :-never too assume anything, surprises and work-arounds are always an option, it just needs the opportunity for an open and honest discussion to find positive solutions. The second thing :-Everyone is an individual, meaning how we learn, how we cope and how we operate as human beings are all different, even if you have the same health condition or disability . These are essential ingredients I learnt very quickly and have helped shape the creation of the digital communication tool called the Empowerment Passport. I appreciate it is just one possible solution in an array of solutions promoting those vital conversations. However, it's committed action and application of those agreed solutions delivered in a clear and consistent way that will embed change and become the norm rather than the exception .

We are actively testing the Empowerment Passport out in the 2 NHS pilots, but need time, investment, reflection and commitment for further co -production in partnership with the NHS to reach the ultimate goal of caring for the carers.

Mandy Whalley