During Learning Disability Week (15-21 June), we are highlighting examples of care and support across Hightown's learning disability schemes that help service users retain and develop their independence...

The importance of open conversations about death and loss between care workers and service users with learning disabilities was brought into sharp focus recently when John, a resident at one of our schemes in Buckinghamshire, sadly lost his sister Sylvia.

On hearing of her death, John's support workers learned that, because of the Covid-19 restrictions in place at the time, the local council’s environmental health department planned a cremation with no family or friends in attendance. 

The support team knew this would be devastating for John, who had previously expressed his desire for both himself and Sylvia to be buried at their family church.  Scheme manager Julie Monaghan decided to step in and advocate, contacting the environmental health department to explain John’s situation. Fortunately, they were extremely understanding and supportive, liaising with the funeral directors to arrange a burial according to John’s wishes.

“John had spoken to us many times of his wish for himself and his sister to be laid to rest with their parents and brother, Albert at their local church in Aylesbury.  He knew all about death and the routine of a funeral, having attended family funerals in the past, and his expectation was that he would carry his sister’s coffin and lay white carnations and roses.  We were heartbroken to think that this may not happen.”

Willow House scheme manager Julie Monaghan

“We are so grateful that in the end John was able to give his sister the send-off he had imagined.  The funeral directors arrived at Willow House so that he could place a white carnation and white rose wreath on the coffin and the procession left with the undertaker walking in front of the hearse as he had asked.  John was supported to attend the church by two staff members in a chauffeur driven car and on arrival, he was helped to carry his sister’s coffin to her burial site.  The vicar held a lovely service in the graveyard and the sun shone beautifully.”

The experience has reinforced to the team the value of having end of life conversations with service users gradually over time, particularly as John’s sister’s death was unexpected. 

John was supported to give his sister the send off he imagined

Julie adds:

“Death is a sensitive subject for us all and it’s no different for someone with a learning disability.  You can’t just sit them down and blurt it out, which is why we spend time gradually discussing service users’ wishes and expectations.  It’s not a topic we avoid with service users – sometimes we even joke about it together. 

“Where service users have capacity, as in John’s case, involving them in funeral plans so they can say ‘goodbye’ is an important stage of grieving. We have also kept the conversation going with John since the funeral.  We believe the fact that he can continue to talk to us about visiting the grave, decorating it and being buried there himself when the time comes is really helping him through the grieving process.”

Julie found the knowledge she had gained through Hightown’s distance learning course on end of life care to be invaluable throughout the experience.

She concludes:

“I have found the course really beneficial - it has required some commitment in terms of time, but it has been well worth the effort.”