The importance of ‘reasonably adjusted’ care

The lead nurse for learning disabilities at Barts Health NHS Trust in London explains how ‘learning into action’ work is improving care for people with a learning disability, autism or both in an urgent or emergency situation, and is one of the key ways to making services accessible, keeping people safe and getting the best possible outcomes:

As the lead nurse for learning disabilities in a busy central London hospital I get to know lots of people with a learning disability, autism or both who use hospital services.

One of my jobs is to try to make sure that we do all we can to make it as easy for disabled people to use health services as it is for people who are not disabled. This is called making reasonable adjustments.

One person I have got to know well from previous time spent in hospital is Tim (not his real name) and I know that he gets extremely anxious around hospitals; so when I had a call from a triage nurse in our emergency department saying Tim was sitting in a car outside the department with his carers I went to help.

Tim has a learning disability and autism and only uses a few words but gestures well. Tim’s carers had brought him to the hospital because they were worried he had lost weight and was not eating or drinking very much and had reached the criteria in his community care plan for a hospital visit. I knew that if Tim wasn’t supported in the right way he could be unpredictable and was at risk of hurting himself or other people and then isn’t able to make decisions about his treatment.

When I arrived in the car park an emergency consultant and a senior nurse were already speaking to Tim’s carers. He was in the back seat of the car and was clearly indicating that he was not getting out but, having done this before, I knew what staff needed to do.

We arranged for Tim to be driven to the ambulance bay as this is the shortest and quietest route into the resuscitation bays, which are usually reserved for patients with life threatening trauma or medical conditions. Although Tim didn’t appear to have either he did need medication to relieve some of his distress and let doctors take blood, and this was the safest place to do that.

Reassuring Tim and distracting him as much as possible we held him and headed toward the bay which I had arranged to receive us, with a consultant ready to give medication without delay. Although Tim was very active and making lots of noise we continued to reassure him as he drifted off to sleep.

Before long all of his observations were done and Tim was willingly putting out his arm for his blood pressure to be taken. This was a real success as following his last admission staff had been taking his blood pressure every day to get him used to it. Blood was taken, fluids were given and X-rays were taken and then he moved with me and his carers into a side room to carry on with his treatment.

In that room we dimmed the lights and Tim’s carers talked, reassured and held his hand as he was waking up. Nurses were able to do their observations on him and doctors considered further treatment and whether more medication was needed.  Throughout this I supported his carers to be confident and empowered as they know him best of all and I regularly checked in with other staff to make sure his needs were being met.

Tim was moved onto a ward where he stayed overnight in a side room, accompanied by his two carers the whole time. Looking back on this admission and on past ones I believe this is the right way to care for Tim, hospital staff listening to his carers who recognised he needed to be treated despite his agitation. Staff listened to me regarding Tim’s capacity and ways to reduce his stress and avoid risks to Tim and others.

Staff in turn brought their clinical expertise and compassion to Tim and because of that they discovered that whilst on the surface Tim’s lively and noisy behaviour did not strongly suggest he needed hospital treatment for his symptoms, this was masking an acute kidney injury which, left untreated, is a very serious condition.

Tim’s story really demonstrates how involving learning disability specialists, having a hospital admission plan, a low threshold for investigations and a real multidisciplinary and multi-agency approach to caring for people with a learning disability, autism or both can make sure that disabled people get the care they need, at the right time and in the right place.

NHS England is currently developing a vibrant online learning disability mortality network for professionals committed to improving health and social care for people with a learning disability.

More information on reasonable adjustments is available here:

Tricia Handley

Tricia Handley trained as a learning disability nurse 30 years ago. She has worked in a number of roles: community nurse, multiple disability trainer, research nurse, project lead supporting people to move from long stay hospitals, clinical nurse management.

She also enjoyed studying quite a bit during this period, gaining first class honours in Interprofessional Practice at City University and post graduate cert. in Health and Social Care Management.

Tricia is passionate about equality and specifically collaboration, both within and outside the NHS as a means of achieving it. She is currently Lead Nurse for People with a Learning Disability in Barts Health NHS Trust and enjoying the challenge of an acute hospital environment.

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  1. Lois Tozer says:

    Such a refreshing approach, and one that upholds Tim and everyone else dignity. Hopefully NHS colleagues will learn from this ‘at first glance’ resource heavy, but both anxiety and cost saving procedure. Doing things the right way will always mean thinking diversely, but it makes us all better humans for doing so. Inspirational, thanks so much for sharing

  2. John Lutchmiah says:

    Well done and hope more evidence are published which will help other professionals but also RNLD about how important they are

  3. Marie Houston says:

    Well done Tricia! It is great to hear of examples of best practice. This is especially important for junior staff as well as student nurses. Well done and keep up the great work.

  4. Rob Gough says:

    I am a father and carer for my son who has both a learning disability and autism and I am presently part of the Shropshire teams working on both the Transforming Care Partnership and LeDeR work with the CCG’s.
    My eye was taken on the mention of the “vibrant online learning disability mortality network for professionals”, where can I find out more on this please bearing in mind I am regarded as an “Expert by Experience” as opposed to an NHS employee?
    Many thanks.

  5. Julie Richardson says:

    I have a 51 year old sister who has severe learning disabilities. We are based in the West Midlands. In recent few years her personality has significantly changed and she appears to us, her family who know her, to be in pain. She has stopped walking although there appears to be no physical reason but she’s always pointing to her feet when she’s upset. We have campaigned for several years for her to have a blood tests or some kind of examination but apart from a couple of half hearted attempts the local services, they have informed us it’s impossible because of her rights as she would need some form of sedation. Can anyone help point me in the right direction of who to contact as we are desperate for help?

    • NHS England says:

      Thank you for getting in touch Julie, we are very sorry to hear this and a member of our team has contacted you by email hoping to be able to help.

      Kind regards,
      NHS England.