Be Surprised: Wherever you are, whoever you are, whatever your illness

Last week marked Hospice Care Week – a national campaign raising awareness of hospice care and what it means to all of us in the community.

There are so many myths and misunderstandings about hospices. People worry that a hospice is a sad place, a place where people go to die, or that it is there as a last resort.

I have been privileged to know many people who have received hospice care. Most have been cared for by hospice staff at home, but some have been inpatients on our ward. People have been surprised by the warmth and happiness that has enveloped them. They have been surprised at the efforts to which hospice staff and volunteers will go to try and make the lives of patients and families as good as they can be in such difficult times.

Hospice care is about helping people live with illness and bereavement, helping them make the most of every day. It is about holding onto hope, not giving up hope. People can meet others in similar circumstances, or they can get counselling and advice to help them manage the challenges of serious illness and dying.

Last week I was talking to a man who said the hospice had made him stronger. When he was first diagnosed with a brain tumour he was worried about how he would cope, but counselling and coming to Orchard Day Centre had made all the difference helping him to find the strength to go through treatments and surgery.

His experience is a good example of what we do and why we do it: we care about people and their lives. You might be surprised at the level of warmth and, yes, even joy found in hospices. Above all, we recognise what it is to be human and that every moment of our lives is precious.

I believe the role hospices play in society is crucial in trying to make dying better, but we need to be able to make things better for more people. I would encourage anyone struggling to cope with dying, either themselves or with regard to a relative, to pick up the phone.

You don’t need to wait for a doctor or nurse to suggest it. Advice is available 24 hours a day, 365 days a year. If you are unsure, ring your local hospice. You never know, you might be surprised at how we can help.

Helping others: Help yourself...

The inspiring ‘Games Makers’ at the Olympic and Paralympic Games have given volunteering a high profile recently. Their enthusiasm and willingness to help has been a crucial element in making both events such a success and it is wonderful to see these volunteers being recognised for their contribution.

Volunteers have played a major role in community life in Suffolk and it is important to recognise the things that ordinary people do every day to help others in need. St Nicholas Hospice Care could not do the work it does today without its superb volunteers.

Michael has volunteered for us for 6 years. He helps keep the ward stocked with dressings, drives patients to and from the Hospice and helps count donations in the finance department.

There is also Sarah who, in her day job, works on a family farm but in her spare time supports bereaved children as a volunteer with our Nicky's Way support programme.

One of our new volunteers, Liz, works 4 days a week in London but gives her time to be a Hospice Neighbour, offering companionship to a patient in her community and helping out with errands. She is also a bereavement visitor, supporting those who have lost a loved one, and also finds time to be a Hospice Ambassador, helping others to understand our work.

Volunteering is a great way to support a cause you are passionate about. It’s a way to do something you have always wanted to do, but not as your day job. Volunteering can fit alongside work, student life, retirement and times of unemployment. It can help you develop new skills or brush up old ones. I have known many people get back into work because of their experience as a volunteer.

St Nicholas Hospice Care makes sure that our volunteers have the training and support they need with the  emphasis on fun and not on paperwork or bureaucracy.

It is wonderful that the London 2012 Games Makers have brought the world’s attention to the great spirit of kindness and generosity shown by so many people. Let us now also recognise the amazing contribution that people in our local communities give every day.

Volunteering can make a difference to your life and others. Why not give it a try?

Talking about dying

It’s a strange fact that the thing we are all certain to experience as human beings is often the one that we find hardest to talk about. Yet, far from being sad or painful, talking about dying can reduce our fear, it can bring us together and can even be a liberating experience.

Talking about dying makes us think about our lives, our loves, our relationships and what is truly important to us. Perhaps we shouldn’t leave discussions about how we die until we are ill?

As a Hospice nurse I was privileged to be part of many conversations about dying. Some people balanced planning their death and funeral with their next holiday or special time with family or friends. One woman I knew was so determined not the miss the party after her funeral that she held it the month before she died!

Having worked in hospice care for more than 30 years, I know that dying is sad and emotional but being informed and prepared can help. When pregnant with my first child, the practical preparations of classes, understanding the pain control available and where I could give birth all helped - as did making sure the freezer was full of ready meals. Preparing for death is similar. Understanding what might happen and what you and your family or friends would want are equally important. Professionals can suggest and advise but how and where you want to be cared for is up to you.

Being prepared and sharing your thoughts with family and friends can be a gift to them as they will know what you want. If you are suddenly taken ill, doctors will ask your family what they think you would want to happen. If you have had those conversations and perhaps even written them down it will help make sure you have the type of treatment you would want and perhaps in very extreme circumstances prevent life saving treatment when you actually would have preferred to be allowed to die peacefully.

Facing death is hard, for the dying and those who will be left behind, stories in the media are often about those whose dying is painful and undignified. We do not hear about the many thousands of people that have been supported by family, friends and professionals to have a peaceful and dignified death. Hospices have played their part in improving this, but I believe there is much more work to be done if we are to make everyone’s experience of dying better.

St Nicholas Hospice Care has helped people have many of these conversations, advice can be found on our website, www.stnicholashospicecare.org.uk, and and on www.dyingmatters.org

Putting people at the heart of care

We hear a lot in the news about ‘health’ care and ‘social’ care. But the debates that take place are often made in response to political changes and legislation; I would suggest we are in danger of losing sight of what ‘care’ people really need when they are ill or dying.

Hospices, like many other charities, put the person and their family at the heart of the care they give. When a person has a life-threatening illness and is facing the end of their life, it is crucial they are treated as an individual, not a diagnosis.

National proposals seem to give a much higher priority to caring for people in relation to their illness and their medical needs and a much lower priority to someone’s everyday or ‘social’ needs.

Everyday needs include getting washed and dressed and eating and drinking, as well as other day to day challenges that can make someone feel they are losing their dignity or who they are as a person.

It is holding on to who you really are that is so crucial when you are dying; your relationship with your partner, your family, friends and even your pets. The things that one did so easily when well, like shopping, gardening, ironing or walking the dog suddenly seem insurmountable and a burden when you are ill and can be a painful reminder of the change an illness has brought about.

What national documents and guidelines so often ignore is that people still need to do the shopping and think about their daily lives in order to manage their death well. We should not define people by their illness. Instead we need to recognise that people have lives in their own communities that are still an important part of their needs (their pets, gardens, the lives and interests that inform their character).

Good social and practical care can make such a difference to a person and their family: Meeting their everyday needs can mean that they can manage the demands of an illness, reduce the burden on families who are caring and can event prevent unwanted hospital admissions.

We are fortunate at St Nicholas Hospice Care to have more than 100 volunteers who have come forward to help people with life-threatening illnesses. Hospice Neighbours service is volunteer-led and works alongside doctors and nurses helping people in their own community.

Hospice Neighbours help with everyday chores such as walking the dog, picking up prescriptions, returning library books, mowing the lawn or sharing a cup of tea. It is about neighbourliness, community and companionship. More than 150 people across West Suffolk and Thetford have benefitted from having a hospice neighbour since the scheme began just over a year ago.

Changes in government funding for social care will have huge implications for all of us as society gets older, the need for care continues to grow and more of us worry about how to pay for it. Whilst we must make sure that the government uses our money wisely and fairly for us all, Hospice Neighbours reminds us that that caring is not just about a financial transaction; it is about people in their communities giving wonderful acts of kindness to others.

Hospice Neighbours are an inspiration to us all and remind us that, whilst at a national level the care system seems intent on reducing people to a price tag, the true human value of caring for each other in times of need is indeed priceless.


My comments were published in East Anglian Daily Times Health Supplement on 14 June 2012

Help the Hospices Conference - New commissioning environment

Thomas Hughes-Hallett's presentation  described how many private companies are now working in end of life and palliative care and could be in direct competition with hospices, he challenged the audience to consider the following:

• Virgin Assura runs healthcare in Surrey 
• Allied Health has now been taken over by Saga in end of life care in Oxford. SAGA will have 20,000 staff caring for chronically ill, dementia care and end of life care by Christmas 2011
• Primecare is working in Nene Valley delivering end of life and palliative care
• PCT allocation per dying person varies between £150 and £6,000 
• Whether it is time for hospices to share back room resources e.g. training, IT etc.
• It may become legal right for people at end of life to have their needs assessed and their care coordinated
• Marie Curie is working in partnership with Cancer Research processing research applications 

Some Hospices are responding to this changing climate and the need for more income by establishing social enterprises or community interest companies, some of which are delivering home care (like a care agency). One session heard from Martletts and Matt Knop about the setting up of such companies and the support available. Perhaps before diversifying, hospices first need to ensure that their current business of delivering services is running as efficiently as possible and that all income funding streams are as profitable as possible. 

Tim Harford at the Help the Hospices 2011 Conference

Tim Harford's  presentation followed Barbara Monroe's and carried on her themes of adaptation and working differently, that we need to value self criticism and move away from the "God complex" that we know best!

Tim's book Adapt  suggests that one should try at something small, be prepared for failure, and whilst our instinctive reaction might be denial, we should learn from our mistakes. The stronger the feedback loops are in an organisation the better it can learn and develop. He goes on to describe some very successful organisations that devolve more power and responsibility to managers and people at the front line rather than keep the power at the top, encouraging people to try different things.

Apparently Google expects 80% of its products to fail (although as Tim said they don't make parachutes). A recent example of this is the news that Google is dropping products that have failed to take off). The key must be that it can afford to take these risks and has a back up plan. Perhaps hospices should be better at trying out more variations of care. Tim recommended Testing Treatments as a guide for research. However he reminded us that generally we averse to trying things out and getting it wrong because we don't like loss. I am sure this might apply even more when working in hospice care and increases the need for managers to be skilled in supporting their staff in trying out new ideas.

Help the Hospice Conference 2011 my reflections on key speakers

The Help the Hospice 2011 Widening Horizons Conference  in Bournemouth, demonstrated a mix of innovation, best practice and how to operate in the changing NHS climate.

Andrew Lansley Secretary of State for Health set the scene, he spoke of his personal experiences of palliative care and hospice care and that it was about the quality of relationships. He highlighted:

• New standards for EOLC would be released in the autumn
• Voices will be used as an indicator of how well we are doing with end of life care, Voices is a survey conducted with bereaved relatives (this means there will be no emphasis on surveys of patients receiving care)
• He was committed to cut red tape and support the patient statement "no decision about me without me"
• The need for more innovation and encouraged commissioners to listen to patients wishes as who should provide care
• The proposed tariff would be piloted in 25 areas to be completed by 2013 for implementation in 2015.

This changing environment meant that hospices needed to consider:

• That some hospices will be working with many different consortia 
• The "Any Qualified Provider" scenario could result in a poor quality provider 
• That Hospital support teams not part of the picture 
• Joining together.

Dame Barbara Monroe challenged us to think about service redesign and the role of community and volunteers. Her presentation given at Lancaster last year gives you an overview of her ideas. She suggested that there are multiple people who are disadvantaged and do not receive good palliative care. We should

• Think about the family 
• The cost of providing care 
• Look at scale and replicability 
• Focus less on data about current users and more about data from non users
• Change attitudes 
• Create leaders of teams
• Have the courage to have conversations about a time to die
• Focus on the education of nurses - hospices are one  of the few places that uses a traditional model of nursing 
• Not over privilege the psychological above the social, social support can be a priority.