A day in the life of our Learning Disability specialist nurse

As a teenager, Phoebe had no idea that the job she now does ever existed. It was experiences in early life that inspired Phoebe’s career choice – once she’d discovered it was an option.

“I used to be a carer for two young adults including my neighbour,” she adds. “I never knew there was such a thing as a Learning Disabilities nurse but as soon as I discovered there was, I started training at 18 and I’ve never looked back.

“There is such a huge gap in access to palliative care for people with learning disabilities and so many inequalities. I think St Christopher’s is the first hospice to create this specific role and that’s why I wanted to take this job.”

Phoebe joined St Christopher’s in January from the Advance Care Planning Team in Tower Hamlets and has set about making this brand new role her own, while making as many people as possible aware of her presence.

It’s fantastic to be able to reduce health inequalities

From one day to the next, her job changes drastically. She can go from contacting, meeting and building relationships with professionals and organisations to working with a patient group to taking phone calls from patients or colleagues.

She also liaises with the learning disabilities teams, social workers, palliative care teams in hospitals as well as care homes in the area. It’s clear she’s already making a difference.

Recently, she helped a woman to move from hospital after she had expressed her wishes to die in the hospice. The woman used Makaton – a communication programme which uses symbols, signs and speech for people with learning or communication difficulties.

Learning Disabilities
A workshop run by Phoebe called No Barriers Here

“Our staff were so receptive to getting to know her needs, they quickly learned her signs and it meant we were able to fulfil her wishes,” Phoebe says.

Keen to raise awareness and dispel any myths or fears, Phoebe has been running workshops both internally and externally. This autumn, she’s planning to shift those fears amongst people with learning disabilities themselves.

“It’ll be informal and we’ll give people a guided tour of the hospice, talk about living and dying and try and make it all feel less scary.”

“It’ll be informal and we’ll give people a guided tour of the hospice, talk about living and dying and try and make it all feel less scary.”

Phoebe knows the importance of accessibility and has been working with our communications team to create easyread versions of our patient information booklets which cover topics such as the services we have on offer, tips on creating a Will, guidance on support after death and the importance of planning ahead.

The first of these to be finalised was the easy read version of our Welcome to St Christopher’s booklet which was launched during Learning Disabilities Week in June.

Currently, Phoebe is working with colleagues on a three-year strategy and by 2026 she’s planning to have significantly raised awareness amongst patients and professionals, created processes specific to patients and increased the experience and quality of care.

Phoebe concludes: “It’s fantastic to be able to reduce health inequalities. You only have one chance to get it right and hopefully we’ll be able to create lots of opportunities to improve the end of life for people with learning disabilities.”

:: This story was from our Autumn/Winter 2023 issue of Connect magazine. To read the full magazine, or to sign up to receive future editions, please click here.

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