POhWER

Jodie is in her early twenties. She has Autism and mental health issues. Jodie was placed in a Psychiatric Intensive Care Unit (PICU) under a section of the Mental Health Act.

Jodie self-referred for advocacy support by approaching Stella, a POhWER Advocate, while she was at an advocacy drop-in on the ward. Jodie told Stella that she found it very difficult to communicate verbally and so Stella gave Jodie her email address and asked her to get in touch that way if she needed any support. Jodie then emailed Stella to ask if she could support her at her ward round the following day. Stella did so and has continued to support Jodie on a regular basis ever since.

On the most recent occasion Jodie asked Stella for support at her ward round to have the restrictions that had been put on her reviewed and removed.

Jodie said she is significantly triggered by ceramics and glass and over the last few months there had been a number of incidents whereby she has managed to get access to these items and has harmed herself. This has resulted in significant restrictions including:

2:1 staff supervision 24/7

all of her clothing, stationery and soft toys removed from her room

use of a flexible toothbrush and cutlery

community and ground leave stopped.

Jodie is an avid pen pal and can write dozens of letters a day so not having access to stationary has, in particular, caused a massive deterioration in her mental health.

As Jodie finds it very hard to communicate verbally Stella and Jodie devised a pattern of working whereby Jodie would email Stella with details of all the restrictions she wished to discuss at ward round and her reasoning for changes to be made. Stella would then meet with Jodie face-to-face before the ward round and go through her list and discuss with her how she wanted to present her case to the doctor and how she might respond to any questions he would raise. If she was particularly anxious Stella would accompany Jodie to the ward round but often it was enough for Stella to be a sounding board for Jodie to practice presenting her case to the doctor. This system worked really well and Jodie became increasingly confident, self-aware and articulate in presenting her case.

As a result a number of the restrictions on Jodie were either lessened or lifted and Jodie was able to have access to her stationary so she could resume writing to her pen pals. Jodie’s mental health has improved significantly and she is now waiting for a bed to become available on a ward for people needing less care and support.

Jodie thanked Stella for all her support “I have really appreciated all of the support you have given me whilst I have been on the PICU, even when I pushed you away you would always keep coming back and checking in on me and I grew to trust you. Your support, particularly around issues I wanted to discuss at ward rounds, has been so helpful.”

Stuart is a 60 year old man who has Down's syndrome. Stuart lives in supported living accommodation. He experiences severe anxiety about most health interventions and travelling in vehicles. This means he only accesses the community as far as he can walk.

Stuart had been experiencing unexplained pain, weight loss, and recent blood test results were abnormal. The GP was concerned that Stuart might have cancer and wanted to refer Stuart for a CT scan. Stuart was assessed and was found to lack capacity to make a decision for himself about having a CT scan so Stuart's GP referred him to POhWER for an Independent Mental Capacity Advocate (IMCA) to support with a best interest decision.

Terry, a POhWER IMCA met with Stuart and his key worker at his supported living accommodation. Terry explained the role of an advocate and why he had been asked to support Stuart. They then discussed the possibility of Stuart attending a hospital appointment for a CT scan. Stuart’s key worker explained that, in spite of his health anxiety, Stuart had walked to the local hospital for a previous appointment and had enjoyed stopping for a cake and cup of tea at the café. Terry asked Stuart if he would like to visit the hospital café again before speaking with a doctor and Stuart responded with enthusiastic clapping.

Terry explained that Stuart had the right to have reasonable adjustments. They discussed what reasonable adjustments might minimise Stuart’s anxiety. Stuart’s key worker said that Stuart had needed to have chemical sedation with lorazepam before any previous medical interventions, including routine blood tests, so he would expect that some form of sedation would be necessary before the CT scan.

Terry spoke with Stuart's GP who summarised his discussion with a consultant at a hospital which is considerable distance away who had recommended that the CT scan should be carried out there. Terry raised the issues of Stuart's health and transport phobias and the GP agreed that it could be extremely difficult for Stuart to travel that far as he would have to go by car. The GP agreed that a reasonable adjustment would be to investigate whether the CT scan could be done at Stuart’s local hospital.

The GP contacted Terry to confirm that the CT scan could be done at Stuart’s local hospital.

A best interest meeting was held to discuss whether further adjustments could be made to support Stuart with attending a scan appointment. Learning disability liaison nurses arranged to meet with Stuart and his key worker before the scan appointment to show them around the unit and introduce them to the staff. It was also agreed that it would be in Stuart's best interest to be given lorazepam at home before he set off for the hospital and then further sedation once he arrived at the hospital for the procedure.

The extensive planning around Stuart’s appointment enabled him to access medical treatment with minimal anxiety. The scan result indicated that his pain and weight loss was not due to cancer but instead urinary retention which was corrected by the insertion of a catheter.

Stuart tolerated both the CT scan and catheterisation appointments very well. Stuart was very happy not to be in pain any more following his hospital treatment.

POhWER has been shortlisted as a finalist for the Inspiring Hertfordshire Awards 2023 Diversity & Inclusion Award.

The Inspiring Hertfordshire Awards are held annually by Hertfordshire Chamber of Commerce. The awards focus on and celebrate the expertise, achievements and outstanding contribution that businesses and individuals continually make to the growth of Hertfordshire County.

There are 18 categories. The Diversity and Inclusion Award is new for 2022 and is sponsored by Morgan Sindall Construction. The category aims to recognise the achievements of an individual or organisation that champions diversity and promotes inclusion - in their workforce, their customers and any community outreach work.

We are delighted to have been chosen as a finalist for this award and to have our work towards improving the equality, diversity and Inclusion within our charity recognised in this way. It is especially meaningful to be recognised in the county where our work began in 1996.

The winner will be announced on the 22^nd June at the Inspiring Hertfordshire Awards Gala Dinner.