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Connect with St Christopher’s Archives - St Christopher's Hospice

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.

Our top tips on speaking to children about death, dying and grief

“Grief is one of the most challenging things that we all go through and when coupled with caring for children, it can be even harder,” says Emma Lupton, who manages our Candle Children and Young People’s Bereavement Service.

Knowing how to best to support a child or young person when someone they love has died is a huge worry for parents and carers. That’s why, at St Christopher’s, we offer support for any child or young person from 0-18 years old who has experienced a bereavement and is living within Bromley, Croydon, Lambeth, Lewisham and Southwark.

We offer both individual and group counselling sessions, information sessions for parents and carers, advice and training for professionals, and have a telephone advice service which is open to anyone.

Emma Lupton

“We work closely with parents, carers and the child or young person to understand how they want to be supported,” says Emma. “Our team come from a range of different backgrounds and as well as talking therapy we use play, craft, art and music to help children express themselves.

“For us it is about championing the child or young person’s needs and empowering families to overcome their fears and speak openly about the bereavement,” she continues.

It is natural for parents/carers to want to protect children but it is so important to talk openly as, if we don’t, the death can become taboo or shrouded in mystery and for children this might result in misunderstandings about the death, and children’s imaginings can be more frightening than the reality.

Most children and young people do not need formal bereavement support to help them cope with the death of a loved one. Yet we know this can still be a very difficult time to navigate – especially for the adults around them.

We’ve pulled together some tips to help you have those conversations and support children and young people with their grief.

  • Look after yourself – We know that children tend to cope better if their parent or carer is managing okay. Think of it like putting on your oxygen mask first if you experience issues on a plane – you can only support those around you if you’re looking after your own needs, and please don’t feel guilty about this.
  • Be honest – children and young people need an honest and age appropriate explanation for how the person died. Use concrete, factual language such as ‘death’ and ‘dying’. Sometimes we try to protect children by using phrases such as ‘gone to sleep’ but this can be problematic as younger children do not understand the permanence of death and may even fear going to sleep. We also know children try to fill in the gaps if they don’t have all the facts which can be very scary.
  • Don’t say anything that cannot be unravelled in the future – if the circumstances of the death are particularly traumatic, then be careful not to give a false story. Instead give a simple account that you can add more detail to as the child gets older. It is important for you to maintain trust.
  • Give children a choice to attend the funeral – this is an important human ritual that helps us to grieve, children included. If children are prepared and know what to expect, it can help them to attend.
  • Normalise feelings – reassure them that it is okay to feel a range of feelings from sadness, anger, despair or even numbness. We all respond in different ways and not everyone will cry – but that doesn’t mean they are not upset. You might also see a change in your child’s behaviour – try to see this as a communication of feelings rather than them misbehaving.
  • Try to maintain routines – at a time when their world will feel inconsistent and unsafe maintaining routines can provide much needed safety and stability.
  • Try not to judge – we all respond to grief in different ways. For teenagers it can be helpful for them to go out and socialise with friends. This doesn’t mean they don’t care or aren’t sad. Young children jump between emotions quickly – from sadness and despair about their loss to playing and laughing five minutes later. This can be disorientating for parents/carers but know it is normal and healthy.
  • Be led by them – by checking in and allowing them to guide the conversation and support you will be able to support them in the way(s) they find most helpful, for example ask the child or young person who they want to know at school and how they would like to mark special days or anniversaries.

If you feel you or the young person you are supporting needs more specialised support then please do call us on 020 8768 4533.

:: This article 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.

Connect with St Christopher’s

This issue is packed full of interesting articles, from tips on how to speak to children about death to an interview with comedian, TV host and our ambassador, Tom Allen.

If you’d like to have future issues sent to you, please register your interest here.

If you’ve got any questions or comments about anything you read, or would like to share your experience of St Christopher’s, please do get in touch by emailing communications@stchristophers.org.uk

Connect issue 2 autumn 2023
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