Cookies on the ehospice website

We use cookies to ensure that we give you the best experience on our website. We also use cookies to ensure we show you advertising that is relevant to you. If you continue without changing your settings, we'll assume that you are happy to receive all cookies on the ehospice website. However, if you would like to, you can change your cookie settings at any time.

Saint Francis Hospice patient story highlights the many faces of hospice care

Author: Saint Francis Hospice
13 October 2017
  • Carly Davies and Clinical Nurse Specialist Katy Chelchowska

This week is Hospice Care Week, with the theme “We Are Hospice Care” to show the variety of people involved in patient care and the day-to-day running of a hospice. Saint Francis Hospice in Romford, Essex, share the story of Carly Davies, who has been cared for by the hospice at her home in Brentwood, in the day centre, and by their complementary therapy and physiotherapy services.

Carly, 36, is a beautiful young woman with a great sense of humour and a big smile. She loves to laugh, go shopping for clothes, spend time with her family, and have a glass of wine at her local.

But Carly has very complex medical needs and without the specialist services she receives from Saint Francis Hospice her life would be very different.

Carly has never been able to speak and has always had physical and learning disabilities, but prior to a gradual deterioration when she was in her 20s, she had been able to lead a relatively independent life, walking, following instructions, dressing and feeding herself.

In December 2013 Carly was eventually diagnosed with a rare form of Neurogenerative Brain Iron Accumulation (NBIA). After years of waiting for her condition to be identified, her devoted parents Debbie and Peter Davies were glad it had finally been given a name, but they were devastated to be told there was no treatment or cure for the life-limiting neurological disorder and she was not expected to live for more than four years. 

Within just a few months her health had deteriorated so rapidly that Carly lost the use of her legs, her body started to twist and she became totally dependent on her family and her carers. Her prognosis was reduced to two years, and in April 2014 she was referred to the Specialist Community and Crisis Support Team at Saint Francis Hospice.

Clinical Nurse Specialist Katy Chelchowska and the hospice medical consultant assessed Carly in her home shortly afterwards and they immediately took steps to manage her pain and make her comfortable. Katy also identified a range of services at the hospice that Carly and her family could benefit from.

Carly’s mother Debbie, said:

“I do not know what we would have done if we did not have Saint Francis Hospice on board. During our first meeting Katy experienced Carly’s symptoms, her arms would go into spasms and she would howl in pain.”

“Before we had contact with the hospice there was a period of a few weeks when Carly did not sleep at all. It has been a long journey getting her medication under control but she is in a good place now. She is as pain free as she can be and her sleep has really settled down.”

Carly has received reflexology from the complementary therapy team and physiotherapy. Her parents were referred to the family support team for carers’ support, and she has been seen by one of the hospice’s medical consultants both at home and at a hospice outpatient clinic.

Of the help they had from medical consultant Dr Mark Howard, Debbie said:

“We had a scare earlier this year and Dr Mark Howard sorted it out. He thought it was possible that Carly had a bleed in her stomach. He asked for blood tests to be done and we found out she was badly anaemic, which was treatable.”

It has now been more than three years since Katy first met Carly and her parents, who are separated but share the care of their daughter, and over that time they have all developed a strong rapport.

Debbie’s first experience of the hospice was when it looked after her mother before she died in 2011, but like most people she was not aware that 85 per cent of patients were cared for in their home or in a care home. She was amazed to discover how much Katy and the community team could do to improve Carly’s quality of life.

Debbie said:

“I used to think hospices were solely for people with cancer.”

“Carly still sees her consultant neurologist at Queen’s Hospital every six months but nothing can be done for her, so where do you go?”

 “It means so much to know that I can ring Katy or the 24-hour advice line anytime if I have any worries and they will be able to help me. Katy has prepared us for what we need to do in an emergency situation and she has taught us how to use special ways of giving Carly pain relief.”

Another crucial aspect of Katy’s role is liaising with healthcare professionals such as GPs and district nurses, and she has even sourced specialist equipment so Carly can sleep and rest more easily.

She regularly visits Carly at Heathlands Day Centre in Dagenham where she attends five days a week to monitor her closely. Because Carly’s condition is so complex and continually changing, her specialist knowledge and training enables her to support and advise staff about her medication and symptom control.

Carly has outlived her prognosis and Debbie says the hardest thing for the family is not knowing what will happen at the final stage of her life, but what they do know for certain is that the hospice will be there to support them every step of the way.

Hospice Care Week runs till October 15. For more information visit Hospice Care Week and Saint Francis Hospice

See more articles in Care

Comments | 0 comments

Hide
There are currently no comments. To be the first to make a comment...


Add comment

Denotes required field

Your Name

Email

Comment


Top Jobs

Recommended Events