Achieving our ambitions for the life that people deserve: part two

In the second of two blogs, Dr Julie Higgins, NHS England’s Director of Transformation – Learning Disabilities and Senior Responsible Officer (SRO) for the Transforming Care programme, reviews the last year of work to reduce inequalities by improving physical health and wellbeing.

A vital part of living well in the community is good access to primary care (your GP), and that’s been a huge focus as well for us over the last year. Anyone with a learning disability over the age of 14 can have a learning disabilities health check although most don’t, so we’ve been working on lots of initiatives to put that right, as well as to encourage the use of Summary Care Records (SCR) so that wherever someone is in the health system, their support needs will be flagged.

We’ve worked with Mencap on the fantastic ‘Don’t Miss Out’ campaign to make GPs and their patients with a learning disability more aware and more likely to make health checks happen. We’ve worked with the RCGP to publish a great set of resources to help doctors do the health check.

In the meantime we continue to collaborate with NHS Digital to get more information about people with a learning disability on their GP register, to tell us where we need to reduce health inequalities and get better at preventing and treating conditions such as diabetes and epilepsy which people with a learning disability are more likely to get; and providing screening for some types of cancer, which people with a learning disability are less likely to get checked for.

So we know where there are health inequalities: and alongside all this work to reduce inequalities, we are also continuing to lead the world’s first national review into the deaths of people with a learning disability (LeDeR), to learn from what’s working well and where further improvements could be made. People with a learning disability are often in touch with a range of different agencies that each hold a piece of the jigsaw when understanding a person’s death, and the involvement of families and listening to their view is crucial when looking at this. Earlier this year LeDeR was endorsed by the national ‘Learning From Deaths’ Programme as a model for Trusts to follow in conducting local reviews.

Each day 30-35,000 people with a learning disability take a prescribed psychotropic drug when they don’t have a mental health problem. To tackle this we have built a cross-system coalition, including all the royal colleagues, people with a learning disability and their families and carers to stop the over medication of people with a learning disability (STOMP) and challenge poor practice across the country.

Our social care partners have recently backed the STOMP pledge too, with 90 organisations having signed up. Collectively they support in excess of 34,000 people with a learning disability, autism or both.

We have been overwhelmed with support from partners for STOMP: at a recent event in Westminster hosted by the Rt Hon Norman Lamb MP we helped to launch new resources designed to embed the campaign into practice. In July, theatre company MixiT will be showcasing a new performance which illustrates why STOMP is such a crucial component of people having the right and opportunities to achieve their potential.

We have worked with 13 organisations to improve the quality of health services and co-design and implement Always Events® and develop two further NHS Quality Checking toolkits, giving seven in total, allowing people with a learning disability to assess the quality of services they use.

We established a children and young people sub group focussing on early intervention and treatment pathways, with an independent chair – Jane Ramsey. We also welcomed Christine Lenehan’s review of children and young people which reminds us of the energy and commitment that’s needed to go as far as we can to give children and people the best possible chance to thrive.

So whilst we know that lives are shorter, that it’s more challenging to make sure people get the screening and diagnoses to keep them well, or trigger support, we also know this isn’t inevitable, we can learn from good practice and close the gaps.

We need to improve – and we are – how we care for people with a learning disability. As I’ve described here there is lots of work happening to do this, and it’s our shared responsibility to make sure that people get the best treatment and the best experience we can provide. So I urge you to ask yourself what makes good healthcare and what makes a good life – and how we can be sure that everyone gets an equal chance to have both.

Dr Julie Higgins

Julie has held a number of NHS positions including Chief Executive, Deputy Chief Executive and Director of Public Health in PCTs; she led the development of CCGs in Greater Manchester. She has been the Regional Director of Commissioning in NHS England as well as and has been SRO for large scale hospital reconfigurations following hospital merger to improve child and maternity services. Julie was Vice Chair of the Greater Manchester Public Health Network which carried out a number of ground breaking public health initiatives including the development of the Greater Manchester Health Commission.

Before joining the NHS, Julie worked at London University in the field of immunology after gaining her PhD. Julie is a Fellow of the Faculty of Public Health. She has a strong commitment to reducing health inequalities and alongside her working life has undertaken voluntary work with Youth Offending Teams.

In her Current role as Director of Transformation/SRO Learning Disabilities she is leading on:- Reducing health inequalities and improving health outcomes for people with Learning Disabilities; Improving services and reducing reliance on hospital beds, for people with learning disabilities and/or autism with mental health issues and/or behaviours that challenge.


  1. Kassander says:

    “So I urge you to ask yourself what makes good healthcare and what makes a good life – and how we can be sure that everyone gets an equal chance to have both.”

    A very good initiative, thank you.

    Where, when and how are you going to enter into F2F discussions with P&P and, where appropriate, carers?

    That means actual P&P:

    NOT people who have set themselves up as so-called Patient Leaders (Which in many cases are now SMEs subsidized by Our=NHS’ money);

    NOR VCSE organizations which purport to represent the voices of actual P&P, carers, etc.
    (Which in many cases are now subsidized by Our=NHS’ money and direct payments from H M Gov’t – as long as they promise not to be ‘political’.)
    It’s Our=NHS
    We want Our=Voice – the Voice of Patients & Public​​

  2. Dr Umesh Prabhu says:

    Dear Julie very well written. To transform NHS we need transformational leaders with courage. If not nothing will change
    As a society if we can care for most vulnerable people of our society we can be proud of our NHS. Dementia, Learning Difficulty, Mental Health, Black and Minority Ethnic patients health and elderly care we must get this right.

    We reduced harm to patients by 90% and I am happy to chat to you.


    • Kassander says:

      “Put not your trust in princes, bureaucrats or generals, they will plead expedience while spilling your blood from a safe distance.”
      Niccolò Machiavelli.

      WE, the Patients and Public, must be our own leaders and take back control of Our=NHS from the cabals which have been placed in control of everything from CCGs to the Board of NHS England.

      Our lives and those of our children and grandchildren depend on US to join the struggle to repossess Our=NHS.

      It’s Our=NHS
      We want Our=Voice – the Voice of Patients & Public – in the high level decisions.