Groundbreaking training offers a better healthcare experience
In this blog:
- About Sarah and her condition
- Making an informed choice
- Best interests decision
- Groundbreaking training
- Healthcare treatment at home
- Inspired? Join our team
Hello. My name is Hazel and I’m a Brandon team leader in the Oxfordshire area. I’d like to tell you about some groundbreaking training which is enabling someone we support to have crucial healthcare treatment from the comfort of their own home.
About Sarah and her condition
We support a 52-year-old lady who has learning disabilities and autistic traits. To protect her identity, I’ll call her Sarah. Sarah lives in a shared house with two other people. She is a very strong and independent lady. She is non-verbal and communicates using Makaton signs.
Sarah has stage 5 kidney failure. It’s been a long journey, but at the beginning of March, she had surgery to have a peritoneal dialysis (PD) catheter inserted.
In PD, the catheter is used as a filter, to clean the blood, when the kidneys are no longer performing well enough to keep someone healthy.
Making an informed choice
Sarah has had lots of medical appointments and many visits to the renal team and pre-dialysis nurses. She has built good relationships with all the medical professionals at the hospital. The nurses tested several different types of dialysis catheters and let Sarah see how the different dialysis types work. They really did go above and beyond to make her feel safe and understood, and making sure her voice was heard.
Our support team also worked hard to prepare Sarah as much as possible. They watched videos and went through easy read information with her, so that she could make an informed choice. Ultimately, Sarah decided she would prefer the catheter that went in her tummy.
Best interests decision
All the information and evidence was taken to a best interest meeting, which involved various multi-disciplinary teams, including pre-dialysis nurses, specialist renal doctors, learning disability nurses, and peritoneal nurses.
Sarah’s close friends acted as advocates and her support team leader, locality manager, and key worker, were by her side throughout.
A lot of people were involved in making a very big and important decision on what Sarah’s treatment would look like. Every option was discussed and Sarah’s thoughts and feelings were taken into account.
The decision was made to treat Sarah with peritoneal dialysis (PD) at home. The primary reason for this is that Sarah gets distressed when she is in hospital for long periods of time. Dialysis treatment done at home, would have the least impact on her quality of life – which we believe is as important as the act of prolonging life.
Groundbreaking training
Next, came the hard work of training the staff team to deliver dialysis. This has been groundbreaking. It’s the first time that the PD nurses in Oxfordshire have ever trained a group of carers in a home setting!
The nurses were incredible in facilitating comprehensive training for the whole team. It was a new challenge for them, as they rarely train more than two people at a time. They even went the extra mile and created easy read, step-by-step guides for us.
Despite some nerves about taking on such an important role, Sarah’s support team is hugely enthusiastic and committed to delivering the dialysis treatments.
Healthcare treatment at home
On 11 March, Sarah received her first peritoneal dialysis from the comfort of her own home. For the first three days, we were supported by a PD nurse who was very reassuring, and the step-by-step guide was really easy to follow. It went smoothly, without any complication. I was so proud of Sarah. She was brave and patient with us and afterwards, she asked if we would do it again the next day – which, if you know Sarah, is a massive seal of approval.
During the first three days, a nurse was present whilst we delivered the treatment. This allowed everyone in the team to have the opportunity to do the dialysis with the nurse’s support.
Since Sarah’s at-home treatment began, we are now delivering dialysis, twice a day, all on our own. The nurses have given us the confidence to do it and we know that they are just a phone call away, 24/7, if we need any help or advice.
Sarah has also had a positive review with the PD nurse at the hospital. The dialysis is working wonderfully. The toxins in Sarah’s system have all reduced and as a result, she has been able to stop taking some of her medication. Another bonus is that she has been able to relax the restricted diet put in place by the renal dietician. It’s working well and Sarah is so much happier.
Hazel Lord
Team Leader
Inspired? Join our team
If you’re inspired by this story and want a job role that truly makes a difference to the lives of people with a learning disability and/or autism, visit our jobs section.
