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Paving the Way

Early intervention for children with learning disabilities whose behaviours challenge

Improving Services for People with Learning Disabilities and Autism at Alder Hey

by Joann Kiernan posted on 16/08/17

Alder Hey Hospital

The recent Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) and the introduction of Learning Disability Mortality Reviews (LeDeR) are both aimed at trying to understand why the inequalities in access to healthcare faced by people with learning disabilities and/or autism exist. It is clearly a multitude of factors that contribute to these issues for both service users and their families. As part of a strategy aimed at trying to improve access to healthcare, Alder Hey Children’s Hospital in Liverpool have created the new role of Consultant Learning Disability Nurse. This post was designed to support the trust in improving services offered to children with learning disabilities and/or autism and their families, and I feel very lucky to have been the person chosen to fill it.

As one of only two posts in the country the role builds on existing work happening across the trust, supporting the development of user-friendly, equal access and provision for all. As a result of the national drivers and in response to the needs of children, families and staff, an acute liaison nurse has also been employed specifically to look at supporting the trust in making access to care and providing reasonable adjustments as easy as possible. As we all know, hospitals can be scary places. We hope that if we improve experiences in the early years of a child’s life they will be more likely to want to access services to get their needs met in the future.

Key developments for Alder Hey have included the creation of a Learning Disability and Autistic Spectrum Condition Steering Group that incorporates staff, families and local voluntary organisations to direct future developments and ensure real participation in building resources for all in the trust. A local parents reference group feeds directly into the steering committee to help Alder Hey in listening and working alongside those who use the services, so they can share their experiences, expectations and most importantly ideas. Working in this way has so far taught us that families and children have the best, most practical, simplistic and often cost-effective ideas that have real impact on care. Their enthusiasm to help us improve is fantastic.

Joann Kiernan, Consultant Learning Disability Nurse at Alder Hey

All work undertaken at Alder Hey relating to the strategy for learning disability and/or autistic spectrum conditions are shared with the local acute liaison network in Liverpool. This was originally formed by the Liverpool Clinical Commissioning group and has since gone from strength to strength in ensuring that services are working together to support continuity of care for all as they move between services across the Liverpool area, both within hospitals and the community. Working alongside Liverpool Mencap, the network has developed training packages, assessment tools and information for patients and staff. They are to be standardised across services and to help people negotiate their care through the multitude of providers that they come into contact with to get their health needs met.

A further exciting area of work for Alder Hey has been the development of Positive Behaviour Support training that has been designed to highlight the needs of children who may particularly struggle with the hospital environment, new faces and often painful procedures. The response from all levels of staff to this type of training has been overwhelmingly positive. The training focuses on how behaviour is perceived and how staff can interpret the message that a child’s behaviour sends to allow us to adapt our care approach to their needs and listen more effectively. I think we need more of this across all mainstream services to ensure that responses to people’s distress are supportive and proactive. The appetite and level of commitment to get better at this has been overwhelming for me as a learning disability nurse. We must do more to inform and support people on the frontline of supporting people.

I am happy to share the work being done at Alder Hey as part of the much larger agenda to make access to acute health care more effective. We can only do this by working in partnership and really listening to children and their families.


  1. I am so pleased to read this and to know there is now a body of people who will oversee the health and care of children with Autism and learning disability. My daughter is 50 years old now so although this comes too late for her I applaud what’s being done. When Shelly was born in Oxford street in 1967 no one told us what was wrong, we took a baby home who screamed continusly. She was admitted later to Alder Hey with CDH which had been missed at birth. This stay in hospital away from me trauitised her and I believe was the beginning of all the behaviour. Over the years we believed there was no help and we managed the best we could. Finally at the age of 18 we admitted we couldn’t cope with the behaviour and she went into care. It took many further years of wrong placements and heartache before finally in 2007 she was given a chance to live independently with full time supervision. She is so much better in this environment. Even tho she takes a lot of medication both for epilepsy, diabetes, and behavioral problems I always wonder if some of this medication could have been prescribed unnecessary that just maybe a little more understanding by her cares may have helped. She’s always on antibiotics for something and I worry that in the end all this medication will have a long term effect on her health. Now with your new approach to handling and understanding the needs and health of children with learning disability/ behaviour problems I can only see a brighter future for them all. Congratulations to you and your team and I wish you all the best in the future.
    Kind regards
    Phyllus Rowlands

    Phyllus Rowlands August, 16th 2017
  2. Nice to,hear about this. How can we contact you to arrange a presentation in london
    Good luck

    Ally August, 17th 2017
  3. Hi Ally. If you email your contact details to we will forward to Joann.

    Catryn Ladd August, 17th 2017
  4. Great.

    Rachel Dixon August, 17th 2017
  5. Sadly I lost my son ( he had additional needs) in a hospital environment due to negligence. The staff did not understand how he communicated pain anxiety and fear.
    I would love to have the opportunity to share some of my ideas with you to protect other vulnerable youngsters and adults and to learn what you have achieved so far.

    Mrs Sue Jones August, 17th 2017
  6. My son has sld and autism, he is 23 now but is still being treated at alder hey, our main consultant now is dr didi from endocrinology, I would like to be kept up to date with your work and also any work that is being done around transition to the royal hospital which we will obviously have to face soooner or later.
    Jo marshall

    Joanne marshall August, 17th 2017
  7. I’m so glad things are being put in place in England but here in Scotland nothing exists to help us. My 17yr old son is Autistic and we have been fighting the system for years. Only now after taking Aberdeen City Council to court are things finally happening. Very sad for all families involved.

    Lisa Donnelly August, 18th 2017
  8. Great article and there have been some improvements at AH. My main issue is transition. We are lost in between Alder Hey and Aintree Hospitals and I’m getting nowhere quickly with my complex daughter and PMLD son. I’d love to discuss this further.


    Angela Billington August, 19th 2017

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