Written evidence submitted by Dimensions (CLL0105)
James’ story – impact of the pressure on health services during COVID-19
Throughout 2020 James had quite complex health issues. James was quite elderly at age 74.
James had COVID in April and was admitted to hospital.
Because of COVID there were no visits to hospital allowed so staff could not be with James and he had no family. People at the hospital didn’t know how to feed James and it seemed like there was no time for the nurses to learn his Speech and Language Therapy plan or properly read and understand his Hospital Passport.
The hospital passport is a vital tool to help hospital staff support people who have a learning disability. It outlines key information about a person, including their health history; the reasonable adjustments that will help them to engage with treatment; guidance on how to keep the person calm, comfortable and – most importantly, safe. Support teams will work with other professionals, often in primary care, to prepare a hospital passport so that the person’s needs can be understood quickly when they are admitted to hospital. In the context of the pandemic, where visiting has been restricted, the hospital passport has been more important than ever.
As a result of his needs not being understood and met, James was catheterised and consequently lost lots of weight. His support team were unaware of the catheter until his discharge from hospital. There was no prior communication from the hospital about James’ catheterisation and the team were offered no training for this. Initially they had to use a makeshift bottle for the urine and eventually got better supplies from Amazon.
The support manager questioned the catheter remaining in situ, but the hospital said that it had to stay in and that the team would only be responsible for emptying the bottle. However, James developed infections at the site. The catheter was removed but James then suffered urine retention because it had been in place for some time, so it was refitted. The support manager provided information and guidance for the team until the District Nurse started making weekly visits.
Also, James had a pressure sore on discharge from hospital. This was dressed by the District Nurse and it healed.
The support manager asked the District Nurse for a support plan around catheter site health. This was agreed to but never arrived. The team did their best to keep Frank healthy and safe. A support plan is important to ensuring that those providing care and support understand how to do so safely, so the delay in putting this in place jeopardised James’ care.
Eventually, the support manager asked the GP to have the catheter removed because as well as continuing infections, it was very inconvenient for James’ mobility and was causing him to have a very poor quality of life. The team were very concerned about causing James pain when helping him to move etc. The GP was good and did an urgent referral to Urology early/mid-Summer. James was waiting for an appointment and continued to have regular infections and his catheter was in and out a lot. Eventually, there was blood seen in the catheter bag and James had very low urine output. The District Nurse referred to Paramedics as it was a Sunday. Paramedics attended and took James to hospital for catheter refitting. This was in late Summer.
In November, again there was blood in the catheter bag. The team called 111 and James went to hospital. After a few days in hospital the team were notified of discharge one evening but James arrived home early morning the next day. The support team do not know if he had been waiting all night, given he was expected home the night. James came home and staff saw that his hand had ‘flopped’ and that he was clearly very unwell. Paramedics started CPR and immediately took James back to hospital, but James had died. The support manager wonders if James might have been dead on arrival home, but has no way of knowing this.
The discharge process for James is very concerning. James’ experience is one of a number of hospital discharges where the person has returned back from hospital without proper advice and advance warning for the support team.
James had had a Negative COVID test on admission to hospital.
There is an ongoing Coroner’s inquest into cause of death but an interim Death Certificate issued stating ‘Suspected Cardiac Arrest’ as cause of death.
We believe that James’ experience was complicated by the pressures on health services at the moment and by the COVID-19 restrictions. Use of tools such as the hospital passport would have supported hospital staff to meet James’ needs. Permitting visitors to support him would also have helped to ensure he was well cared for whilst in hospital. The communication from the hospital was not sufficient and meant the team did not know when James was returning home or how to support him with his catheter.
It is distressing to hear about James’ experience and the deterioration in his quality of life following his first hospital admission. We have shared James’ story with the committee to underline the impacts of pressure on health services on people who have a learning disability.