An award-winning former hospice chief has returned to volunteer for the charity after a 15-year absence – supporting reception and recruitment. In the run-up to the hospice opening, Maureen Gill, now 71, writes about the history of The South Bucks Community Hospice.
You may all be aware that this superb building came about from a very humble beginning!
You will also probably be amazed as I am that it happened because of one very determined lady who simply “had a dream!”
That woman was Edie Pusey, a local health carer, who identified a desperate need for nursing care for cancer patients and their families living in South Buckinghamshire. Edie wanted to ensure that such patients had their needs addressed not only in a physical way. She knew that their psychological, spiritual and social requirements were also vitally important as these were the core elements of Palliative Care. This would be no mean feat, especially as the funds were zero, but Edie was not to be deterred in her mission!
To begin to make her dream come true, Edie and her supporters formed a Trust and her charity was launched! Trustees, supporters and volunteers set out to fundraise and miraculously by 1989, had enough monies to begin a 24 hour home nursing service, aptly named “The Edie Pusey Nurses.”
By 1992, funding enabled the purchase of the house (later to be named Edie Pusey House) at 9a Amersham Hill, in High Wycombe. The Trustees obtained permission for the building to be used as a Hospice Day Care Centre, which opened its doors to the people of South Bucks and their families in 1994.
Trained nurses and volunteers provided Palliative Care over the years to thousands of patients. The word “Palliative” comes from the Latin word “Pallius” which means “a cloak or outer garment.” Thus, whilst the hospice could not provide a cure for patients, it could find a plethora of ways to ameliorate the situation in which patients with life threatening illnesses found themselves, by “wrapping around” the symptoms that were distressing with expert knowledge and appropriate treatments. Thus, quality of patients’ lives could be improved.
South Bucks Hospice soon began to find the people who could help to make this philosophy of hospice care real, as services rapidly expanded from nursing to other allied services, many of them given purely as a humanitarian gift-many professionals and lay volunteers simply worked on a sessional basis, many for no salary. So it remains today.
Music therapy, Art classes, and Reminiscence workshops helped patients to find new skills, to renew old interests and most importantly, to talk about their lives. In music particularly, many patients could find an outlet for tensions, either by gaining a sense of calmness or, in some cases, by simply “getting it all out” by banging for a long time, very hard and very loudly on the drums!!
Whatever patients needed, South Bucks Hospice tried hard to provide. Services were expanded to support not only cancer patients but those with other chronic and difficult diseases such as Motor Neurone Disease, Parkinson’s disease and Multiple Sclerosis.
The hospice began to offer a bereavement service for families who had lost a loved one and from that our “Lights of Love” service was launched and carries on now every year, around Christmas.
Soon the hospice launched the lottery. This has generated a great deal of money to its coffers and of course, for those with the lucky numbers, it has meant big surprises and many a treat!
Then our shops began to open and under a manager, volunteers sold the goods donated. Those volunteers also fulfilled many other roles, including the unpacking of bags of donated items. This was, and still is, often less than rewarding-you may be astounded to know of some of the things found in bags donated to the hospice-I am not going to enlighten you so will say no more! The role of the volunteer is not always an easy one! Of course the majority of donations are resold and the hospice benefits greatly!
The hospice provided a Lymphoedema Service for patients whose illness had left them with limb and body issues that required specialised advice as well as dressings, supports and bandaging on a regular basis. Patients were also taught by the Lymphoedema nurses regarding skin care and clothing and as with any chronic condition, are given psychological support in dealing with their problems on a day to day basis.
A physiotherapy department opened and staff tried to help patients regain mobility they had lost and often aimed to aid others to retain what freedom of movement they still had and to prevent deterioration.
Many and varied complimentary treatments for patients and their families became extremely popular. Relaxation is so important in illness as well as when you are a carer. Any of you who have enjoyed a simple massage can identify with the way this treatment releases tensions and helps to talk more openly about difficult feelings.
Excursions to the seaside, stately homes and other places of interest were made possible with the arrival of a mini bus. Annual garden parties took place in the lovely grounds of Edie Pusey House to raise funds and local schoolchildren often took part in the day. Christmas shopping trips were much anticipated by patients, giving them the opportunity to buy gifts for their families-in other words, patients were helped to lead normal lives-just what so many of them tell us they would wish to do. Some of the major shops in High Wycombe even set aside special opening hours for patients and the staff especially catering for them to shop at Christmas!
So, unbelievable support was generated for Edie Pusey house by individuals, local groups and businesses alike. Indeed, it was thanks to a generous legacy that this new building has come about!
Over the years we have been very fortunate to have high profile patrons who have all supported our hospice cause and development. Several mayors have also committed to fundraising on our behalf and we are grateful to them all.
Of course, the hospice is all about patients and families. One husband said that when his wife died after spending many months being cared for at Edie Pusey House, he found he couldn’t get out of bed in the morning. Everything about living was so hard and he began attending the bereavement group sessions at the hospice. He explained that his life seemed like he was living under a light with the “dimmer switch” on and his sadness was overwhelming him. After care and support from trained staff, he said that very very gradually the dimmer switch seemed to be turning off and he felt the light of life coming back to him after many, many months of darkness and isolation. He was able to return to his career and to his young children. He had found a safe harbour, an understanding and supportive atmosphere in which to share his very private and personal thoughts and memories with a professional counsellor.
There are many patients’ stories like this and these are a measure of the professional counselling and support given by the hospice.
The founder of the modern hospice movement in this country Dame Cecily Saunders said that when she felt really useless one day she asked a young patient what else she could do to help him-his answer was simple-“care for me with your HEART as well as your HEAD,” was his reply. That just about sums up what this hospice tries to do in so many ways, on a day to day basis.
Now we find ourselves today not as you perhaps may think, at a new beginning, as if something innovative is just about to start for the very first time! We are just at a new point, in a new place, in the South Bucks Hospice’s never ending circle of Palliative Care. Butterfly House is simply a continuum of our specialist services that began all those years ago with Edie Pusey. We, more than ever, carry her lamp of caring for local patients and their families, working with many other organisations both locally and nationally.
Because we are now fortunate to have this beautiful purpose built facility means of course that a much needed expansion of all our services may be provided. Added to all the support previously given in Edie Pusey House, we already have added new opportunities for those who need them.
Staffs here have already received an amazing accolade from the International Journal of Palliative Nursing. Their award recognises the work of the hospice’s multidisciplinary team in setting up a service specifically for patients with brain tumours. This is a huge achievement and a prestigious award with much competition from many centres in the UK. Congratulations to them all!
On this new site, there will be an area especially dedicated to younger cancer patients with their specific needs.
There is a room dedicated to pastoral care, be that religious or secular.
A cafe for the public is in the pipeline-so, please tell your friends. This is your hospice too!
There is a hairdressing room and beauty treatments available to lift the spirits. There is an amazing bath that allows some of those patients with the greatest needs to access it!
Creative writing sessions will begin for patients, with opportunities to relax with poetry and prose Patients can spend time composing letters for family members and deciding what words they may want to put in a personalised memory box. These have, in the past, proved extremely comforting for patients, especially if they have children who are too young to understand the family situation at the time of illness. Perhaps these letters will never be opened until a special birthday or a marriage, but a parent can leave behind words of encouragement for their family to help them many years after they themselves have left this world. Of course, there are many things like this that we all would not want to contemplate. That is the work of the hospice and we hope to provide an environment of trust and confidentiality for our patients where no subject is taboo.
Martyn Lewis, the newscaster, who was for some time a hospice patron, said that he found hospices to be places of happiness and tears. I think this is a very accurate description. Of course, a diagnosis of a life threatening or life limiting illness can be devastating for both patient and family. Here, at Butterfly House, staff and volunteers, try to ease the pain in many ways. The hospice movement measures life not so much in “Quantity of Days “but in “Quality of Days.”
All these services do not however come without cost! Yearly, the hospice needs to raise a whopping £1.1m and they only receive 3% of funding from statutory sources.
It is sad indeed that Edie Pusey is not alive today to see her dream continuing to come true but we, at the Hospice, will not forget her embryonic beginnings based only on determination and hope. We will each strive at Butterfly House to keep her dream alive and promote her ethos of Palliative Care, free at the point of delivery, for all who may need it.