At Harrow Mencap we use campaigning as a tool to improve the lives of the citizens with learning disabilities that we work with. The latest Public Health England report has estimated that 6.3 times more deaths occurred among people with learning disabilities than the general population between 21 March and 5 June 2020.

Deeply concerned about this tragic spike during the Covid-19 pandemic, and the already higher death rates of people with learning disabilities than the national average, we stepped up our local campaign for a dedicated learning disability (LD) nurse at Northwick Park Hospital. We wanted to make sure that people with a learning disability from Harrow would be able to access the support they need at their local hospital, which until recently had to share the North West London Healthcare Trust’s only LD nurse with four other hospitals.

After months of hard work together with our self-advocate group, we successfully convinced the trust to recruit another LD nurse. 

The new LD nurse will be able to work with the current LD nurse Chloe Donovan to help avoid more unnecessary deaths of people with learning disabilities.  

Self-advocate group played a powerful part in the campaign

The self-advocates created a petition that collected over 600 signatures and used the relationships they have built over the years with our local MPs from different parties to gain their support for the campaign.  

The Harrow West Labour MP Gareth Thomas celebrated the campaign’s success saying: “Hundreds of Harrow residents called for another dedicated disability nurse at Northwick Park Hospital and I am glad to see the LNWH Trust now committed to this vital recruitment. While the dedicated Learning Disability nurse will provide care and support to those with learning disabilities, they will also provide additional support for many other patients at Northwick Park. I was proud to play a part in this excellent campaign from Harrow Mencap.” 

Our self-advocate group’s campaigning has demonstrated the powerful role that it has in improving our clients’ lives and why Harrow Mencap is a campaigning organisation first and foremost.

The self-advocates have not stopped with their achievement of recruiting another LD nurse, and are now campaigning for the following changes at Northwick Park Hospital: 

  1. Environmental adjustments like a changing places toilet.
  2. Better opportunities for patient involvement in the improvement agenda.

They have sent a letter to the North West London Healthcare Trust, which is supported by all three of our local MPs from across the political spectrum, as well as a few local service providers and voluntary organisations. 

Shortage of LD nurses is a national issue 

We have also used our local campaign’s success as a springboard to raise awareness of the shortage of LD nurses nationwide. According to the latest figures from NHS digital, there has been a 40% drop in the number of registered LD Nurses in NHS posts from 5,368 in 2010 to 3,223 in 2020.

This has involved working with the Conservative MP for Harrow East, Bob Blackman to table an Early Day Motion (EDM) in Parliament on the shortage of LD nurses. The motion won support from MPs all over the country, including Northern Ireland, Hartlepool, and Brighton. 

The EDM is available on the parliamentary website and a draft letter has been created to encourage people to write to their local MP asking them to take action on this. There is a template for self-advocacy groups wanting to send a letter as a group, and also a template if you want to write to your MP as an individual constituent.

It is thanks to campaigning by self-advocacy groups from across the country that there is now an increasing acknowledgement by both politicians and healthcare professionals that there is an urgent need to address the healthcare inequality that exists in our society between people with and without learning disabilities. 

We hope to work with other self-advocacy groups and allies to help make the shortage of LD nurses a stronger focus on the agendas of politicians and healthcare professionals all over the UK.  


Jordan Creed is the Engagement and Participation Manager at Harrow Mencap.

Acknowledgements: Thanks to the leading LD nurse Jim Blair for his help and guidance.