Helping Sean

Sean is 43 years old, he has a severe learning disability and Lennox-Gastaut Syndrome – a rare and severe form of epilepsy. He lives in a residential home, where he has been for two years following the breakdown of his last placement.

Sean has complex needs and has previously spent over 12 months on a psychiatric unit due to a lack of care providers who could meet his needs. During his stay in hospital, Sean’s behaviours were considered too ‘challenging’ for him to live in a supported living/residential environment therefore a specialist placement was sourced.

Here, Sean’s anxiety and behaviour escalated significantly. Sean received two to one support 24 hours a day. Sean’s behaviour was not only dangerous to others, but also to himself, and as a result multiple safeguarding alerts were made. Sean would bang his head repeatedly in excess of 100 times per day, bite furniture and became aggressive towards his carers.

How did we help?

Our Independent Advocate acted as Sean’s Relevant Person Representative and consulted with the two home managers responsible for Sean’s daily living arrangements. Our Advocate consulted them on every aspect of Sean’s life to figure out how best to support him. From this, she:

• Made a referral for Sean to see a sleep hygienist after it was revealed he rarely slept longer than three hours per night.

• Pushed for a referral for an MRI scan, after it was found that Sean would often wake up in an agitated mood after sleep. The scan was to find out if Sean was suffering from night terrors.

• Suggested that Sean could benefit from an Learning Disability nurse.

• Made a new request for the GP to refer Sean to a psychiatrist and Speech and language input to maximise his potential in communicating with staff.

• Pushed for a full medication review with his GP to see if any of his medication needed to be adjusted or was contributing towards his behaviour.

• Asked the home to consider healthier food and drink options, after it was found Sean routinely woke in the night and snacked on chocolate and coffee, which could be making him over-stimulated.

• Discussed reviewing existing behaviour charts and incident reports to make them more person-centred in assessing Sean’s behaviour triggers.

• Requested more robust and more detailed care plans, detailed daily note keeping and consideration from his key workers to ensure consistency and continuity of care.

• Sean’s repeated head banging had led to a permanent abscess on his forehead, so our Advocate requested cushions and a padded headboard to make his living arrangements more comfortable and also minimise his potential injuries.

Our Advocate also attended numerous strategy meetings in relation to noise and nuisance allegations made against Sean. It was decided at one of these strategy meetings that Sean was to be moved to a bespoke property, where neighbours would not be able to complain about Sean’s loud vocal noises. Our Advocate found that Sean’s loud vocalisations were often made as a sign of happiness.

Our Advocate strongly objected to this proposed move at each meeting and informed decision makers and professionals that it would potentially undo all the hard work that our Advocate and the home managers had done in working to stabilise Sean.

Liaising with the home managers on a regular basis and objecting to Sean’s change of accommodation, our Advocate was successful in creating a more stable and happy life for Sean.

What was the outcome?

Liaising with the home managers on a regular basis and objecting to Sean’s change of placement, our Advocate was successful in creating a more stable and happy life for Sean.

Our Independent Advocate reminded all professionals of Sean’s rights under the Human Rights Act and Care Act when objecting to his change of accommodation, resulting in Sean being able to stay where he was happy.

As a result of all the hard work from our Advocate, Sean was allocated a psychiatrist and an Learning Disability nurse which led to Sean being diagnosed with Autism. Sean now has regular medication reviews, is able to go out on the minibus each day and enjoys visiting parks and cafes. His sleep, appetite and quality of life have all significantly improved, as well as relationships with his family. This has also resulted in a decrease in his aggressive behaviours.

Sean now accepts daily personal care, wears clothes, is compliant with his medication and engages well with professionals. The objections our Advocate put forward to the Sean’s funding authority about his move also led to a complete turnaround in this decision and it was agreed that a bespoke package of care would instead be provided at his current accommodation which is home for Sean.
The managers of the home where Sean resides, also feel happier and supported by professionals.

Without advocacy, Sean may have had to move from his home, but with our support, he manages to live a happy, stable life with the support of his professionals and carers.