“TO BE honest I don’t know what we would have done without it.”


Those are the words of Lisa McDermott who has praised the respite and support services given by Oxford based Helen and Douglas House.


Her son Dylan, 18, was diagnosed with Duchenne muscular dystrophy aged six and is now confined to a wheelchair. He goes to Douglas House for respite care.


Duchenne muscular dystrophy is a genetic condition which usually effects boys. 


It gradually weakens the body’s muscles and can be life limiting.

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Originally from Zimbabwe, Dylan and his family moved to the UK in 2015 after political problems there and now live in Standlake, near Witney.


Life has been tough for the family. Dylan missed a lot of school through poor health and his condition means he is unable to be a normal teenager.


But the “oasis” of Douglas House, in Cowley, has given him some freedoms such as sleepovers with friends and trips to the pub.


The former pupil at Marlborough School, Woodstock, said: “I meet up there with my friends and my mum and dad can have a rest. We sometimes play with (computer) game consoles or go out into Oxford to the pub.


“For me it’s a bit more independence, I feel more grown up going to Douglas House.”


Dylan previously had respite care at Helen House, but once youngsters reach aged 16 they go to Douglas House.


Mrs McDermott said the support from the hospice was “tremendous”.


As well as respite care the family is able to talk to other adults who have the same condition, get advice, support and information from staff. 


Dylan, who is currently studying art and literacy at home-based classes, goes to Douglas House for 20 nights a year.


Mrs McDermott said: “They don’t just look after Dylan, it’s like an extended family. They help the whole family.


“If I’m feeling down or worried about something they will find out information for me.


“For Dylan, because he books in with his friends it’s like having a sleepover. He can’t have friends to stay at home or go to his friend’s houses.


“We also have a break and we know Dylan is in safe hands and he’s happy and enjoying himself.


“I have often said it’s my oasis, you can go in there and leave your worries outside.”

 

'THEY WERE THERE FOR ME AT DARKEST TIME'

AT THE “darkest time” of the Harris family’s life, an Oxfordshire charity was there to “love, care and support” them just when they needed it.


Last summer mother-of-four Tracey Harris, 51, was given the devastating news she had just six months to live. 


Her cancer had spread to her brain and as her condition deteriorated her doctor recommended she went to Sobell House Hospice.

Oxford Mail:

Jim Harris with his wife's casket and family photographs
Initially she and her husband Jim believed the move would be temporary, but her worsening health meant Mrs Harris spent her final days there.


Sobell House provided not just invaluable support to Mrs Harris, but a lifeline for the entire family.
Today marks the start of National Hospice Week, a celebration of the UK’s hospice movement, and Mr Harris has spoken about his family’s experience.


Mrs Harris’ family had been caring for her at home but it was becoming “overwhelming”. 


At the hospice, the couple and their four children Daniel, 28, Nathan, 26, Jemma Green, 24, and Adam, 22, were supported by Sobell’s entire “caring and dedicated” team, who made anything possible.

Oxford Mail:

Jim and Tracey Harris

Company director Mr Harris, 55, said: “Tracey expressed a wish to die at home – that’s what she wanted. While in the hospice her condition deteriorated and she was getting agitated and wanted to come home. The guys at the hospice were unbelievably accommodating, arranging at massive expense for her to come home.”


She only managed to stay at home, in East Hagbourne, near Didcot, for one night before returning to the hospice.


But for the Harris family it was another example of the “unquantifiable” support they received from Sobell’s staff.


Mr Harris said: “My kids were there a lot and they were told ‘come when you like and stay as long as you like’. Nothing was too much trouble. It has to be a vocation rather than a job. There isn’t one person who did not care, even down to the porter and the ladies serving breakfast.”


Nursing assistant Kayleigh Gaul, who helped care for Mrs Harris, often staying after her shift to sit with her. She said: “We want to give the best last moments to people, to love and support them.”


Ballet teacher and seamstress Mrs Harris found a lump on her breast on Christmas Eve 2011 and it was diagnosed as cancer weeks later. She underwent chemotherapy and a mastectomy, but the cancer spread to her lung and later her brain.


Mr Harris said: “She was a terribly strong lady, very determined. I think her determination enabled her to survive as long as she did. 


“She was never given the all-clear, they were always trying to treat it.”


She moved to the hospice on February 16, the couple’s 25th wedding anniversary, and died on March 20 this year.

HELEN HOUSE & DOUGLAS HOUSE

HELEN House, the world’s first children’s hospice, sprang from a friendship between founder Sister Frances Dominica and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care. 


Sister Frances looked after Helen to give her parents a break, but the situation highlighted the need for respite care for children with life-shortening conditions and support for their families. 


She helped to found Helen House and it opened on Magdalen Road, East Oxford, in 1982. It now has eight beds and four family flats and cares for children from birth to 18.


p Douglas House opened on the same site in 2004 specifically for young adults aged 16-35. The house has seven beds and three family suites.


Both houses provide medical, emotional and practical support, helping families deal with the implications of living with a child who will die prematurely, so they can make the most of their time together.


The charity cares for over 350 current families and 60 bereaved families every year.

It costs £5 million a year to run the homes and the charity has to raise 85 per cent of that total.

KATHARINE HOUSE HOSPICE

THE hospice stands as a living memorial to the life of Katharine Gadsby who died of cancer, aged 20, in 1984. 


Since then, her parents Neil and Heather Gadsby have worked tirelessly to raise funds to develop hospice services. 


They opened a charity shop to fundraise in 1988, launched a bereavement service the same year, and the first Katharine House day hospice service was opened by Princess Diana in March 1991.


An inpatient unit was opened the following April and the hospice now provides a community nurse team, a hospital service and home nursing.


It now costs £3.6 million to run Katharine House, which is based in Adderbury, near Banbury,, of which 29 per cent comes from statutory sources, but cost is growing each year in response to growing demand.
Staff and volunteers have to raise the other £2.5 million each year.


Katharine House’s in-patient unit offers short stays for symptom management, respite care or when a patient is near to the end of life.  Returns home are frequently achieved within two weeks.  


The Hospice aims to create a homely rather than a hospital atmosphere.  


Staff don’t wear uniform and patients are encouraged to make the bed spaces their own.


The Hospice services run alongside other health and social services so we work closely with GPs and other healthcare professionals.

SUE RYDER NETTLEBED HOSPICE

SUE Ryder Nettlebed Hospice has been providing care in Oxfordshire since 1979.


The centre cares for people aged 18 and over who are dying from conditions like cancer, heart failure and lung disease. 


It has 12 beds on site to offer in-patient care and runs a seven-day community nursing service and day services, which help people stay at home. It also provides respite to carers.


The care team includes doctors, nurses, care assistants, physiotherapists, occupational and complementary therapists, social workers, bereavement support workers and volunteer befrienders.


Of the centre’s patients, 33 per cent come for symptom management then go home again.


The centre costs £7,000 a day to run – £2.6 million a year. Of that, £850,000 comes from government, leaving staff and volunteers to raise another £1.9 million.

SOBELL HOUSE HOSPICE

SIR Michael Sobell House Hospice was established in 1976 to care for people suffering with a life threatening illness, and for their families.


As far back as 1962 the need for palliative, end-of-life care had been recognised by the Oxford Radcliffe Trust (formerly the United Oxford Hospitals), but the lack of funds made any progress on the project impossible.


In 1972 a chance meeting between radiotherapist Dr Alistair Laing and a Dr Hughes of the National Society for Cancer Relief (NSCR now Macmillan), resulted in a report confirming the need for 75 beds throughout Oxfordshire, catering for the needs of people affected by terminal illness.


The president of the NSCR at the time, Sir Michael Sobell, was so impressed by the report he decided to personally support the building of a hospice on the understanding that the NHS would fund the running of it alongside donations from the local community, via what would become the Sobell House Hospice Charity.


The hospice now cares for 3,000 patients a year and is jointly funded by The Sobell House Hospice Charity and the Oxford University Hospitals NHS Trust.


The cost of running the hospice comes to more than £4 million a year, of which £2.4 million comes from government.