ellenor: helping families facing terminal illness
PUBLISHED: 13:16 28 March 2017
Manu Palomeque 07977074797
Kent Life's chosen charity ellenor gives vital care in all settings for babies, children and adults and it's reliant on your continuing generosity to be able to continue to help thousands of families facing terminal illness in Kent each year
At some point someone you know will be diagnosed with a life-limiting illness. It could be a child, a grandparent, friend, neighbour or colleague. It could be you.
After the initial shock, would your first thought be – I can’t wait to go into hospital or a hospice? Unlikely.
But what if you could be cared for in the comfort and familiarity of your own home? I know which I’d prefer.
This is the ethos of Kent hospice charity ellenor, which is particularly remarkable in its approach to care for children. Instead of them coming to the hospice, the hospice comes to them, allowing the family to stay together.
It all began with one visionary who founded the Ellenor Foundation in 1985. Graham Perolls was inspired by the deaths of his mother Ellen and father Norman to ensure that those facing the end of life should have only the best care possible either at home, or as close to it as possible.
“We were the UK’s first children’s full hospice at home service, and still one of only a very few acute services providing oncology and end of life care to seriously ill babies, children and young adults in the home. We are the only charity in Kent and Bexley to provide such care,” says Rachel Holweger, Director of Income Generation.4
Hospice at Home also enables adult patients to receive the specialist care and support provided by ellenor in familiar surroundings, with most of its care provided in the comfort of the family home.
It doesn’t stop there either. Recognising it isn’t just the patient who needs support, ellenor’s experienced team supports their families through treatment and beyond into bereavement. There’s also full support for carers, with a programme of specialist information, advice and practical help.
And at the Gravesend-based hospice, the charity’s HQ and where I spend a fascinating morning, an inpatient ward provides care for more than 200 patients (and their families) a year from the age of 14 upwards.
A bright, cheerful place I am immediately struck by how welcoming it feels, and how inspired it is to have the day centre, the main social space known as The Green, at the heart of the building.
Cups of tea are being handed out, there’s lots of chatter and comings and goings and not a hint of gloom and doom.
Anna Clifton is busy at her sewing machine running up soft furnishings for the centre, but her main role is altering patients’ clothes whose weight may have gone up or down. She also does any alterations needed for clothes donated at ellenor’s 16 shops and bespoke customisation too.
A beautiful piece of wall art on closer inspection turns out to be a memory tree made up of individual leaves with patients’ names on them, which families can dedicate to a loved one.
In one corner there’s a café offering food made by the dedicated in-house team, who are supported by donations from local stores such as Marks & Spencer, who have a corporate sponsorship with the charity.
Just off The Green is The Quiet Space, open to all denominations (or indeed none at all). It’s a tranquil, private room where you can light a candle, listen to music, write on a memory star and hang it on a decorative tree.
There have been weddings blessings, renewal of vows and two wedding ceremonies held in here – the doors open up and one bride had 40 guests. The kitchen whipped up a cake and flowers came from the stunning hospice gardens, which play such an important part in wellbeing.
Pop into the light, airy dining room and fresh flowers from the garden decorate every table and sliding glass doors open onto a substantial patio surrounded by plants and greenery. A versatile room, it’s also used for craft activities and as a children’s drop-in space.
In other areas on my tour I come across hairdresser Carol Barratt (who also offers wig or scarf fitting support), a seated exercise class taking place, complementary therapy rooms offering services such as massage and reflexology.
However, important as the Gravesend centre is, as I sit down with chief executive Clare Cardy for coffee and a chat, I am gently reminded that ellenor is so much more than a building.
“Our care is in the community,” says the trained nurse who specialised in oncology and palliative care before moving into senior management roles both within the NHS and the voluntary sector in health and social care.
“ellenor provides hospice care for people of all ages in Kent and south London and is the only hospice service providing children’s care at home, which is so important for the children and their families, because that’s where they want to be.
“We offer support for the whole family and not just the patient. We provide holistic care, so it’s not just their physical condition it’s also about everyone’s emotional wellbeing.”
One key difference with this charity’s offer is that while children’s services end at 18 or 19, because ellenor provides adult care as well it means the care can just seamlessly carry on for that young person as they enter adulthood.
And as Clare points out: “Many children with life-limiting conditions are living longer, thanks to medical advances, so there are more of them every year. They are no longer children and need to be treated as young adults now. We can do that.”
She adds: “We provide the best personalised holistic care and support in the home, whatever that individual needs. Some need help practically with their care, some need advice about money, benefits, pensions, family counselling or complementary therapies – everyone has different needs.
“One of the most difficult things people say is that they feel lost because they don’t understand what is happening to them, so one of the most important things we do is listen.
“Our care at home is literally taking the hospice to the home, for whatever is needed – from seeing a doctor, nurse or counsellor to trying to meet people’s wishes, goals and aims.
“We had one young man who was dying but wanted to go back to the seaside of his childhood. We arranged a private ambulance, got permission to drive right down to the beach on the local lifeboat’s slipway and a nearby pub let him choose the music and turned it up loud enough for him to hear on the beach. He died a few days later.
“One patient loved monkeys and wanted to go to Monkey World but in the end we arranged a monkey to come and visit her. One of our doctors put out a call on Radio Kent and someone came forward. It was brilliant.”
I then talk to Dr Russ Hargeaves, who is a year into his role as Head of Wellbeing, which does sound rather a contradiction in terms when you’re talking about people who have been diagnosed with a life-limiting condition
Russ explains: “Wellbeing is normally characterised by a state of health and contentment and I think people imagine that’s quite a difficult ask when you reach this stage of your life.
“But actually we are really pushing the idea that we can help people to achieve that state of contentment in the last few years or months of their lives. Once people have been diagnosed with a terminal illness, many of them are out and about and just getting on with the business of living.
“In the past the hospice movement has been quite maternalistic, so people have come on a set day, been fed, watered and given a range of activities on that one day.
“What the Wellbeing programme tries to do is to give much more choice, so we are developing a programme of events people can do throughout the week on top of our existing complementary therapies, relaxation and exercise groups.
“We want to add into that things like yoga, Tai Chi, drop-in clinics where people can come and talk about welfare, benefits and money matters.”
With a relatively small number of paid staff, ellenor relies heavily on its volunteers and those with life skills are vital – a Tai Chi class can’t be held without a qualified teacher, for example.
Russ adds: “We’re also hoping to build in men-only classes as men tend to get a bit marginalised, especially when they lose a lifelong partner, many of them don’t know how to cook or look after themselves, so the kitchen staff are looking at offering cookery classes.
“We’re planning IT classes, after-school clubs and Friday fun clubs for the children too. We want to build in things for teenagers and adolescents, such as a teen movie night – so it’s a really ambitious programme and we are also looking to spread that out over the weekend as well so we have a seven-day service.
“We have just opened up a carers’ course in Swanley and offer an informal drop-in on Saturdays, which is very popular. We have a welfare and benefits clinic as so many people are worried about things like mortgages, funeral costs, making a will – we can help them even if it is quite late in the day for them.
“We do a lot of psycho-social work so we’ve got a multi-faith chaplaincy that will deal with the bigger life and death issues, and a counselling service that offers pre-bereavement as well as bereavement counselling.
“We try to offer a holistic service and encourage a family to start having some really difficult but necessary conversations which have been avoided for a long time. Sadly, we see a huge amount of family breakdown around death, often over money and lack of planning for the future. If we can encourage that to be discussed before someone approaches end of life then we will.”
One of the biggest challenges is the size of the patch ellenor has as it covers nearly the whole of Kent. Russ is now starting to look into building teams in the further reaches of Kent as not everyone can travel to the centres at Dartford and Gravesend.
Outreach work is one solution and there are currently satellites in Bluewater and in the Swanley Link, where regular clinics take place.
Russ adds: “We are trying to break down some of the barriers that exist towards the hospice sector. Lots of people just see it as a place to go and die. We are so much more than that.”
ellenor has launched a Children’s Hospice at Home Appeal so that it can provide hospice at home support to all the children that need its help. Currently less than half of the children in Kent have they support they need.
To achieve the goal £1.5m needs to be raised over the next three years.
An Appeal Board of 10 influential individuals who share ellenor’s passion to create a lasting legacy to help children and families across Kent is being set up.
The Appeal Board and members’ roles involve the following;
• To work together as a Board to help identify and secure funds that will ultimately raise £1.5m across three years for the Appeal
• To identify, engage and recruit other Appeal Board members and supporters of the Appeal
• To attend three to four Appeal Board meetings a year to discuss fundraising ideas and progress of the Appeal
• To commit to an agreed tenure of three years (unless the funds are raised sooner)
• To act as an active ambassador for ellenor and to spread the word about the Appeal to networks
• To attend a small number of high-profile Appeal events
• Kent Life readers are invited to get involved, either by making a donation to the Appeal or by joining the Board, whose founding members include Amanda Cottrell OBE, Kent businessman Alastair Jessel and Sarah Sturt – they would love you to join them.
Together people in Kent can make a difference to the lives of very sick children.
For more information, contact Rachel Holweger on 01474 320007 or firstname.lastname@example.org
Other ways to help
● Gift it: you can help raise funds for ellenor by making a gift (one-off, regular, via gift aid or gifts in wills) or by joining the Philanthropy Circle, aimed at those who have the capacity to give larger amounts to donate a minimum of £5,000 every year for three years, at ellenor.org/donate
● Fundraise: whether you’re taking part in an organised event, celebrating a special occasion, remembering someone or just doing your own thing, you can set up your own online fundraising page via JustGiving to manage your donations, www.justgiving.com/ellenor
● Join in: ellenor puts on a range of local community events throughout the year, including coffee mornings, quiz nights, dinner dances, summer and Christmas Fairs. Its Secret Garden events provide the perfect opportunity for supporters to share their gardens with friends while raising vital funds, ellenor.org/events
● Challenge yourself: there’s something for everyone, from the Twilight Walk and Santa Saunter to the Fire & Ice Volcano Trek, whether you’re a keen runner, cyclist, or daredevil who has always wanted to skydive, ellenor.org/events
Get in touch
St Ronans View
East Hill Drive
Dartford DA1 1AE
Gravesend DA11 7HQ
01474 320 007, email@example.com