Elliot’s Story – Grammar School House

November 6, 2017

Five years ago, in his early fifties, Elliot was a cheeky chap with a mild learning disability and Down’s syndrome who lived in supported living near Wood Green. He loved to sing, dance, and tease his sisters about the football teams they supported and was the life and soul of the party at the social club where he used to collect the glasses.

Elliot around this time became suddenly unwell and started to experience seizures. These episodes resulted in Elliot being admitted to hospital where it was discovered that he had encephalitis and early onset dementia.

Hospital is where he remained for some time, bed bound, as the encephalitis left him unable to weight bear with poor muscle tone. He also had uncontrolled epilepsy and numerous pressure sores on his sacrum, heels and ankles. Elliot also lost his ability to swallow safely and was reliant on percutaneous endoscopic gastrostomy (PEG) feeding for the provision of all nutrition and hydration.

In June 2013 Elliot’s sisters to whom he is exceptionally close were advised by their local authority that moving back to his previous supported living setting would not be an option. Sisters, Jane and Alice looked at a variety of settings and with agreement of the Local Authority moved Elliot to Grammar School House, in Essex, for, what was thought to be at the time, end of life care.

When he first arrived at Grammar School House he was receiving Tinzaparin injections daily, a nebulizer four times a day, transdermal pain relief patches and epilepsy medication. Elliot was strictly nil by mouth and consequently peg fed. In addition he was non communicative, very drowsy and slept most of the day. Personal care was challenging for the team to provide, as he had presented with so many pressure sores to consider.

Support colleagues were trained to administer medication, and food and fluids via the peg, so that they could provide this support more readily for Elliot and only call upon the relevant nursing teams when more intensive support was required. The entire team at Grammar School House worked hard to provide him with the care and attention he needed round the clock.

Elliot was fitted for slings and a wheelchair, which allowed the support team to move him from his room and offer him a bath. In a milestone moment the team found that bathing Elliot really stimulated him as he became more alert. Delighted, at this breakthrough the team encouraged him to do more. Building further on this, the Occupational Therapy support team assisted the Grammar School House team in getting other people from the community teams involved. Physio supported them with exercises to strengthen muscles in Elliot’s legs and arms.

They trialled a variety of equipment to help his muscles strengthen and with his strength improving he was assessed for a shower chair, which was felt would help improve his personal care choices. Following this he was then also assessed for a comfy chair with a pressure cushion increasing time out of bed and in turn further improving his quality of life.

The speech and language therapy team became involved once he became more alert, guiding the team on how best to reduce feeding through the peg. They all worked incredibly hard with all available professionals and Elliot had his peg removed in June 2014. He was eating full meals when pureed and tolerating fluids, gaining weight and thriving.

Following intense periods of observation and record keeping by all colleagues they were able to decrease the use of the patches and discontinue use of the nebulizer. The GP also adjusted his epilepsy medication resulting in his seizures being less frequent. It was established also at this time that Elliot has sleep apnoea following observations at night and so Elliot now has a CPAP machine to help his breathing whilst sleeping.

The support team were bouncing between weeks where Elliot would be out and about enjoying life and to then be struggling with seizures, chest infections, dehydration and the breakthrough of a pressure area. Seizure activity, chest infections and concerns over the potential of aspirating led to fairly regular calls to the doctor, paramedics and the occasional hospital stay.

During Elliot’s hospital admissions the team worked with the hospital liaison nurse to get Elliot the support he needed during his hospital stays. Grammar School House colleagues were paid by the hospital to provide the additional care needs and this meant they also had familiar colleagues on hand to advocate for Elliot in the hospital setting to make sure all avenues were explored and open to him during hospital stays.

In late 2016 the team noticed that it was taking longer to do the basics with Elliot as he was periodically forgetting what to do when food was put into his mouth. His seizures were changing in nature and he wasn’t responding well to rescue medication. In response to this the support team increased the intensity of their recordings so that they could get a better view of what was going on for Elliot.

Around this time Elliot became unwell and was admitted to hospital. Whilst there he underwent a number of tests including a scan to analyse his seizure activity. Whilst in the scanner he experienced a number of jerks which the team had witnessed many times before and it was discovered that these were not seizure related and instead were related to his dementia. Further analysis the team were able to provide, allowed them to seek a review of his epilepsy medication, which was subsequently adjusted and helped stabilise his seizures in turn reducing the need for rescue medication and improved his state of consciousness. This made it much easier to keep him hydrated and well. It appeared that the dementia was now having a greater impact on his life.

The support team have now noted that the balance of his support has to be continually assessed based on his well-being on any given day and his increase in funding has afforded them the resources to provide this. Through their records and continual review and assessment of them, they are able to tailor Elliot’s support to respond effectively to meet his complex health needs and balance this with the opportunity to also enjoy the things that are important to him.

Once returned from hospital in early in 2017 Elliot moved from the main house to the annex at the Grammar School House, in the hope that this would offer him more mental stimulation from his peers. This has worked particularly well for him and his interaction with others has improved. He has regular sensory or physio stimulation from the team throughout the day.

With dedicated support Elliot enjoys trips, when well, to the pub and local social club to simulate memories of happy times. He has also been to see Colchester United play some of their home matches more recently. He has a weekly swim/ spa session, which provides excellent therapy and relaxation and also attends ‘Bounceability’ occasionally to promote exercise.

Elliot is part of a much bigger family and has two lovely sisters who phone regularly for updates and visit when they can. They have provided a lot of photos, shared stories of their childhood with Elliot and information about the things he used to do and enjoy. This has helped the team greatly in the process to make his support person centred particularly as the dementia makes a greater impact upon his life.

Professionals are and continue to be amazed just how well he is doing and how far he has come when compared with the person that entered the Grammar School House just five years ago for end of life care. It is remarked upon frequently whenever professionals visit.

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