Hundreds storm out of Pilgrims' Hospice meeting

Hundreds of furious people stormed out of a public meeting with executives and senior staff at the Pilgrims’ Hospice in Canterbury last week.

Tensions ran high throughout the two and a half hour meeting, as hundreds of members of the public, and former healthcare professionals, stood up to oppose the decision to close the Canterbury hospice’s Inpatient Ward in 2016. Many of the crowd had lost family and loved ones in the ward.

Members of the public speaking afterwards were already calling the meeting a “catastrophic failure” for the executives, with little to no evidence that anyone was convinced by their arguments.

Hundreds of people stormed out of the meeting when Doctor Richard Morey, the chair of the hospice’s Board of Trustees, told the assembled crowd that they were treating the meeting as “mostly a presentation; an opportunity for us to explain to you what our views are”, as opposed to a public consultation to change plans going forward.

Vicki Radford, whose 41-year-old husband died in the ward, and is a leading voice in the online campaign to stop the plans, said she was disappointed by what she’d heard.

“I wasn’t at all convinced. They didn’t come here to listen to us. They will continue to do what they want, and they will continue to lose funding because of this. We will definitely be continuing our campaign.”

HB Times 2nd June 2014

Hospice closure backlash

Fears donations could drop after shock announcement of closure of Pilgrims Hospice in Canterbury.

Bosses at Canterbury's Pilgrims Hospice are standing their ground over the planned closure of the 16-bed care unit despite a growing campaign to force them to change their minds. They claim the charity-run centre – which opened in 1982 – is "no longer fit for purpose" and the closure will save £500,000 a year.

Instead they want to expand hospice care in the community, with staff visiting patients in their own homes, nursing homes and hospitals. But there has been a massive backlash to the announcement with an online petition calling for the unit to be saved gaining more than 14,000 signatures. A Save Pilgrims Hospice Canterbury Facebook page has been set up and it already has more than 12,000 supporters.

Staff and volunteers are also said to be shocked at the decision, which many claim they had not been consulted on and were of only told of last week. But today Pilgrims Hospices chief executive Steve Auty said:

"The reaction to our announcement shows just how much the local community cares about Pilgrims and we can assure you that we all share that passion. We are touched by the many stories, we have heard this week, of people whose loved ones have died in the hospice and pleased that we have been able to provide them and their families with love and care in such difficult times.

We also know that whilst we have been able to provide this support for many it is still only a small proportion of those who need it, with the majority (almost 90%) dying in hospital, care homes or their own home. So we need to be responsive to these needs and change the way in which we deliver care to ensure that, while we have enough hospice beds to serve east Kent, which we are fully committed to providing, we also provide a greater level of hospice care out into the community.

That is the challenge, which Pilgrims is taking up – to deliver the same care that a patient would receive in a hospice bed but out to a number of locations across the community when and where it is required. We recognise that change can be difficult to contemplate which is why Pilgrims is setting up a series of meetings where we can fully and directly discuss with you our plans, explain why we believe they are needed, listen to your concerns and ensure that everyone has a good understanding of what has been proposed.

We want to work with our supporters to ensure that we deliver the best care for all who need it across east Kent and are in the process of organising venues and dates for public meetings, starting the week of May 26."

But there are fears donations to the charity could fall, with reports some benefactors have even cancelled standing orders to the hospice.

David Denne, who has helped raised funds for the hospice for 17 years and was chairman of its fund raising committee, called the decision "disastrous". He said:

"The manner in which this news was broken in my view leaves much to be desired. To put it mildly I was totally shocked, amazed and filled with sadness at this announcement. To cease to offer such well funded services at our hospice is nothing other than disastrous. For over 30 years our hospice has built a truly wonderful service and is held with such loving memories of lost ones by very many local families, with nothing but warm praise to all the medical staff.

Many companies have donated large sums of money over the years, let alone all individuals who have supported it through sponsored events. It really feels that the carpet has been pulled from under our feet and that all those who have worked so hard particularly over this period of time, badly let down."

Hospice volunteer Keren Tattersall said volunteers were "absolutely horrified" by the announcement and planning to arrange a public meeting. She added:

"I accept that increasing provision of hospice at home teams and the spreading of day care services beyond the hospice is admirable. This will require funding - but not at the expense of our local inpatient facility. But I have heard that some people are so appalled they have even cancelled their standing orders to the hospice and others have said they will not now be leaving money in their wills."

The decision to close the unit is all the more baffling because work is underway on a £260,000 refurbishment of the building, following a grant from the Department of Health. The charity says it will no longer provide 16 inpatient beds at Canterbury from 2016, bringing to an end 32 years of the hospice providing end-of-life care to the terminally ill in the district. But it will continue to offer day care services from Canterbury and its other purpose-built centres in Ashford and Margate will continue to operate with in-patient beds.

The unit at Canterbury will be "mothballed", but charity chief executive Steve Auty insists the site will not be sold off or abandoned but continued to be used for administration and the training of staff and outside care providers. The charity has a monthly wage bill of £700,000 to support is three sites. But there could be some redundancies among the 65 staff who work at the Canterbury unit, most of who will be retrained and redeployed to work in the community.

Mr Auty said care will now be provided in hospitals and at home, ensuring a more "expert and responsive service for more patients". They also claim they can now re-deploy more staff into the "heart of the communities in east Kent". Mr Auty said:

"This is a decision we have not taken lightly because we know the emotional attachment the Canterbury site has with local people. But of our three sites, Canterbury is the oldest and would need considerable investment in the future. There are savings by closing it but that has not been the driving force behind the decision and if there are any compulsory redundancies, they would only be in single figures. We have considered our future with all our staff, who we know are saddened by it too. But hospice care is not about buildings and we believe we can reach more people who need us out in the community."

But the decision to shut the hospice has angered those who recognise the important role it has played in the lives of many across the district.

• Anne Booth wrote on Twitter: "Surely we can't let that happen? It is so important - and we've hardly had it any time. Our healthcare is in a mess."
  
• Andy Dawkins said on Facebook: "Very sad news. Most of us sadly have a connection with the Canterbury hospice. A truly remarkable place run by fantastic and caring staff."
  
• Referring to the closure of Kent and Canterbury's birthing unit in 2012, Lettie Austen added: "Does this mean that we now not only cannot be born in Canterbury, but cannot die here too?"
  
• Darren Legge, the son of late panto legend Dave Lee, said: "What a loss."
  

Canterbury was the founding hospice of the charity, with two others later opening in Ashford and Margate, which will not be affected by the changes. Together, the three sites care for 2,300 people each year and are supported by almost 2,000 volunteers. The NHS contributes just a quarter of the £10.5 million funding needed to run the charity every year, with the rest raised through charity shops, a weekly lottery and a series of fund-raising events.

Hundreds of trustees, staff and volunteers met yesterday in Canterbury, Ashford and Thanet to discuss the "new strategy" for the hospice - known as the Future Hospice Programme. Mr Auty said:

"We want to make Pilgrims Hospice more responsive, equitable and accessible, and to focus on our core responsibility of providing expert palliative and end of life care. By 2016 we aim to provide more of our care in the community and at bedsides in hospital and care homes. We are already showing that this strategy works in practice, and are proud of our newest outreach centre opening in Folkestone on Friday, May 9."

News of the closure comes just months after the Canterbury hospice started a £260,000 refurbishment project and days after it raised almost £100,000 through a charity bike ride in the city. After its closure to inpatients, the building will be used to train the charity's staff and volunteers, as well as health and social care professionals across east Kent.

Charity bosses say they will be working more closely with other providers of inpatient care, including the East Kent University Hospitals Foundation Trust. Chairman Dr Richard Morey said:

"These are exciting changes for Pilgrims Hospice, which will allow us to deliver more care in people's homes, where many want it, while still retaining expert inpatient hospice beds. Together the staff, volunteers, trustees and our supporters will work to make Pilgrims Hospice fit for the future."

Medical director Dr Claire Butler is leading the team implementing the changes, which will cost £500,000 over three years. She said:

"Pilgrims Hospice has grown and adapted since its beginnings in the early 1980s and will continue to do so in new and innovative ways, aiming to serve all the people of east Kent who can benefit from our care and support."

The hospice marked its 30th anniversary with a special service at Canterbury Cathedral in June 2012.

kentonline 12th May 2014

Canterbury's Pilgrims Hospice to close

"Hospice closure means we can care for more patients"

A hospice boss says closing a third of its inpatient beds will mean more people with terminal or life-limiting illnesses can be cared for at home.

Steve Auty, chief executive of Pilgrims Hospices, said hospice care was not about buildings but delivering care where people needed it, whether at home, in a care home, a hospital or a hospice.

Speaking to the Times after news of the closure of the 16-bed in-patient unit at the Canterbury hospice was revealed, he said the changes were necessary to allow the charity to continue into into the future, when numbers of patients are expected to increase. Mr Auty, who has worked at the hospice for nine years, said:

Steve Auty

"There are many more people who will die in east Kent than we, the hospice, can ever cope with. We want to work with health and social care professionals to improve end of life care, and we want to educate and develop those professionals and share best practice with them. Irrespective of illness we will stay true to our holistic way of doing things by caring for people's physical, psychological, social and spiritual needs at the most vulnerable times."

The closure plan is part of a new strategy for the hospices, developed by senior doctors and discussed with groups of staff for the last year. It was endorsed by the trustees last month and includes a commitment to developing more education and development programmes.

Several new roles will be created as part of the changes, including an associate director of education and development, a volunteer development manager and a database manager responsible for improving relationships with supporters. Planned inpatient respite care will also stop, but the 16 bed units at Ashford and Margate run by the charity will remain open. Mr Auty said:

"The strategy has been generated by staff who have the knowledge of providing care. The demand is going to increase in two ways, complexity of illnesses and numbers of patients and there is a need for the whole of the health care system to operate in a different way to make sure the care is delivered for an increasing number of people. We can't cope with everybody now, we are not going to cope with everybody in 20 years time."

And Mr Auty appealed to people to continue to support the charity, which needs £10.5 million a year to run. The changes will cost £500,000 over three years. He said:

"What is important is to maintain support from the community for what we do. We still need people's support to keep going even though we will be operating in a different way. It is an emotional time for everybody. But the clarity of what we want to do in the future makes so much sense. Hospice care is a philosophy of care, it involves education, training and research. Ultimately it is not about buildings it is about the quality of care and we are still going to do that."

HB Times 8th May 2014

Be careful how you go

Support for people at the end of their life in Canterbury and coastal area

Everyone deserves to be treated with dignity and respect as they approach the end of their life, and to be cared for in a manner and place of their choosing.

Most people want to have a say over the healthcare they receive in their last weeks and days. However, it is not always easy to discuss their thoughts and wishes with those around them. Just thinking about it can make those close to them very upset.

But in Canterbury, Herne Bay, Whitstable, Faversham, Sandwich, Ash and surrounding areas, steps are being taken to help people let healthcare professionals and loved ones know what they want.

The My Wishes register lets healthcare staff who are responsible for patient care find out the out what patients want at the end of their life.  The staff then do their very best to ensure that these wishes are respected where possible.

Dr Roxy Didehvar, Clinical Lead for End of Life for NHS Canterbury and Coastal Clinical Commissioning Group, said:

"A lack of conversation is perhaps the most important reason why people's wishes go ignored or unfulfilled; if we do not know how to communicate what we want, and those around us do not know how to listen, it is almost impossible to express a clear choice. The thing people fear most about dying is the associated loss of control. By empowering patients to express their wishes, that control can be restored."

The My Wishes register is a record of decisions about the type of care people would like to receive as they approach the end of their life, including any cultural or religious wishes

It may include information about any legal refusal of treatment decisions they may have made and preferences on where they would like to die, whether at home, in a care home, in hospital or in a hospice. Dr Didehvar said:

"My Wishes is invaluable to support people who are at the end of their life. It will improve end of life care experience for patients and their families and previous work has shown that it helps patients to achieve their wishes in where they wish to die."

The information on the register is held securely online and can be accessed only by staff responsible for the persons care, such as  GP, the ambulance service, community nurses, social care and hospice services. They can access it at any hour of the day or night, so people can be confident that everyone looking after them knows what care they want.

Patients can change their wishes at any time by talking to their GP, hospice staff or any other health professional looking after them, who will update it for them. Patients who are on the My Wishes register can also call the Care Navigation Centre, which is run by Pilgrims Hospices. The centre is available 24 hours a day seven days a week on 01233 504133 for any urgent help of advice.

More than 350 people in east Kent have already outlined their wishes on the register since its launch in August 2012.

The service is being promoted across the area as part of Dying Matters Week which runs from 13-19 May. Displays will be manned at Kent and Canterbury Hospital, Canterbury in the outpatients department on 14 May, in Queen Elizabeth, the Queen Mother Hospital in Margate on 16 May, and in William Harvey Hospital, Ashford on 17 May.

For more information see www.eastkentendoflifecare.org

​thisiskent 13th May 2013

Liberating labyrinth

This is rather lovely: in the midst of fear and pain, people finding comfort and consolation in a simple but convoluted path.

I'm no fan of religion (but a great fan of the few hospices I have spent time in) and although this labyrinth was instigated by a reverend and inspired by a cathedral, it seems that this pattern of bricks has a power, and fills a need, that transcends our modern and formal interpretations of the divine.

You can donate to the Pilgrim's Hospice here.

Reverend Lizzie Hopthrow

One day, in the late 1990s, I saw a labyrinth on the floor of a transept in Canterbury Cathedral and was bowled over by its spiritual resonance. I started reading about labyrinths and I ended up going to see the one in Chartres Cathedral. I’m the chaplain at the Pilgrims Hospice in Canterbury, and the power of that sacred space made me think that maybe this was something we could do to help hospice patients.

We began by having patients make small labyrinths out of clay. I watched a man walk up to one, reach out his hand, and say, “Wow”. I thought, what’s going on there? It’s just a bit of pottery and a shape. But somehow it calmed patients down, and eventually they said, “We want a labyrinth we can walk.”

First we made a fabric labyrinth out of silk. I was amazed by the emotions that hit people when they walked it. One man wept for 30 minutes. He said that his wife had been ill for 18 months and this was the first time he’d been able to express any feelings about it. Some patients would watch others walking and burst into tears. It was shocking.

After seeing how the fabric labyrinth helped patients, I wanted to build a permanent one. We got funding from the Department of Health to build a therapeutic labyrinth garden, which opened in July 2008. It’s the first hospice labyrinth in the UK. And people can wander in and walk it; it’s there for the community. The labyrinth is an ancient pattern - a spiral with one path that leads to the centre and then out again. Most people think of the Minotaur story when they hear about the labyrinth, but that isn’t particularly helpful. The difference between a maze and labyrinth is very important - in a labyrinth you can’t get lost.

There is evidence of labyrinths in many faiths and cultures. They appear in Islam and ancient Christianity; it’s like a spiritual imprint in the human fabric that pops up all over the world. I can’t say where it originated - I don’t know if there’s anybody who can. That’s the mystery of it. But I have done a lot of research to figure out how the labyrinth works. What happens as we go into a spiral walk of this kind is that we slip from the left side of our brain, which is always analysing and worrying, into the right-hand side - the intuitive, imaginative, creative part of ourselves. You can take something that you need to let go of into the labyrinth, and at the centre you can experience peace. For many, it’s a meditation. It makes them calmer.

Sometimes people go into the labyrinth with a question and they’ll come out with an answer. Other times they might have had an outpouring of grief, but it’s like lancing a boil. Once you let the poison out, you feel better. You can’t prove it scientifically - the evidence I have is from my own observations. On one occasion, there was a gentleman on the ward who was dying. He wanted to walk the labyrinth, but he was too ill. So I walked for him. His family was with him, and they all wept together. For me, that’s evidence. I can’t explain it, but I see it happen so often that I’m convinced that it’s real.

Working in a hospice, I think we have more emotional experiences than in other contexts. But there is always loss and grief in life. If you lose your handbag, think of how much of yourself is in it - that’s a loss. The labyrinth, in any situation, is a powerful tool for healing those emotions inside us that are hurting us.

Now I give workshops on the labyrinth at conferences and schools. To begin, I usually ask participants if they’ve walked a maze. Many have. They say the experience was stressful - they couldn’t find their way out. Then I show them a picture of a labyrinth. There’s only one path, and you won’t get lost. I think of it as a metaphor for people’s lives. The maze imprisons you, because you can’t get out. The labyrinth liberates you.

FT Magazine 8th May 2010 Sonia Van Gilder Cooke