But Carly has very complex medical needs and without the specialist services she receives from Saint Francis Hospice in the community, 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 that there was no treatment or cure for the life-limiting neurological disorder and she wasn’t 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.
Carly’s prognosis was reduced to two years and in April 2014 she was referred to the Specialist Community and Crisis Support Team (SCCS) 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.
“I don’t know what we would have done if we did not have Saint Francis Hospice on board,” said Debbie, 58, who lives in Brentwood.
“During our first meeting, Katy experienced Carly’s symptoms where 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, physiotherapy, her parents were referred to the family support team for carers support and she has been seen by a hospice medical consultant both at home and at a hospice outpatient clinic.
“We had a scare earlier this year and Dr Mark Howard sorted it out,” said Debbie.
“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’s 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% of patients were cared for in their home or in a care home and she was amazed to discover how much Katy and the community team could do to improve Carly’s quality of life.
“I used to think hospices were solely for people with cancer,” said Debbie.
“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 about Carly 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.
Katy also regularly visits Carly at Heathlands Day Centre in Dagenham where she attends five days a week to monitor her closely and because Carly’s condition is so complex and continually changing, Katy’s 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.