Who are the real experts?

People who use palliative care services want to be actively
involved to ensure that the pain they feel – be it physical,
psychological, spiritual or social  – is alleviated. And users
would like to be regarded by professionals as whole people, with
intelligence and opinions to share.

Another reason for wanting to be involved is to improve services,
not only for themselves but for others later on. Jane Bradburn,
user involvement adviser at Macmillan Cancer Relief, says: “People
tell me they want to give something back about their experiences,
and this includes patients’ carers, friends and family commenting
on services.”

But whether they are involved enough is open to debate. There is a
concern among some that professionals feel it is impractical to
consult palliative care service users reflecting a paternalistic
view among some professionals. This concern has led users and their
families with the help of charity Help the Hospices to set up a
palliative care user group (see below). 

Most palliative care service users have cancer and over the past 10
years there has been a proliferation of self-help groups of cancer
patients. And following a reorganisation of cancer services there
is now more patient involvement in services. But this is not always
reflected in the experience of other groups of palliative care
users. For them, there is still a long way to go, says Gillian
Chowns, service user involvement officer for the Association of
Specialist Palliative Care Social Workers.

“There are palliative care teams and hospital units that are
innovative regarding user involvement but there is an issue of
tokenism.”

There is often only one service user represented at a user
involvement meeting, she says, and it can be difficult for them to
articulate their thoughts when outnumbered by professionals.

Actually asking a user to share their views can be challenging for
some professionals. Some may, mistakenly, believe that users are
unable to deal with being involved. Instead, professionals often
act as gatekeepers to user involvement and decide not to ask
clients, even though they may be willing. According to Chowns, some
palliative care staff “pre-select” who they think will be a good
user to have involved and don’t approach those who may be seen as
“too ill, not confident enough or not a ‘committee’ type of
person”.

What stops some professionals interacting with users is knowing
they cannot give the person what they want, says Di Cowdrey, chair
of the West Sussex Disabilities Network. “Some professionals get
embarrassed when they realise that what the service user needs or
requires is something they cannot provide, so they don’t consult
them.” Cowdrey, who is 63, has had chronic obstructive pulmonary
disorder for the past five years and has always made a point of
being involved in decisions over her care.

Neil Small, professor of health research at the University of
Bradford’s School of Health Studies, believes users who want to get
involved in discussions about their care are doing so. But, he
concedes: “Patients may not want to get involved in their future
because the future is a scary place.” As he warns in the book
Too Ill to Talk? User Involvement in Palliative Care, this
reluctance to plan ahead may mean people’s needs and wishes are
being unfairly sidelined.

If some clients are nearing the end of their life they may be more
concerned about controlling the pain and thinking about who will
care for their children, says Bradburn. Another barrier may be that
any meetings means time taken up with travelling. For people with
little time left, this might feel like a poor use of that
time.

The question isn’t whether involving users is impractical, it’s
whether users want to be involved. For Small, palliative care
service users and their families can be involved in three ways: the
first is for every front-line palliative care professional to
acknowledge that what patients say is as valid as professional
advice; the second is for organisations to enable users to decide
where and how they are cared for. The third relates to the
strategic level, as Small asks: “What does a health care system do
to move resources from where they are to where patients would like
them to be? It is about a joined-up approach.”

He adds: “A person at the end of life ought to be able to decide
who visits them and when, and determine the balance between
medication and awareness.

Most don’t get any specialist palliative care – most people die in
hospital, not in a hospice. Most people would prefer to die in a
hospice or at home.

“We are a very long way from achieving the sort of health services
that respond to the basic preferences of patients at the end of
their lives.”

Cicely Saunders, the founder of the modern hospice movement, said
the essence of palliative care is to offer “total care for total
pain”. Whatever health and social care professionals do for people
using palliative care services, clearly listening to them is the
first step towards achieving this.

‘Users do not want to be treated with kid
gloves’

 Mandy Paine is 43 and was diagnosed with chronic obstructive
pulmonary disorder 15 years ago.

She requires special breathing apparatus 24 hours a day and a
nebuliser every four hours. She has osteoporosis because of her
long-term use of steroids and angina because of the lack of oxygen
reaching her heart.  

Paine is a member of the newly established Help the Hospices
palliative care user group. She also finds the time to be involved
in an advisory group for a Brunel University PhD student’s research
into palliative care and is in the process of establishing a
support group called Spheres of the Rainbow with West Sussex
Disabilities Network chair Di Cowdrey.

So why get involved in so many user groups? She says she wanted to
change a negative situation into a positive one: “If there was a
chance to improve services for people who come after me then I
wanted to take it. I’ve spoken to a lot of professionals who read a
lot of books and think they are the experts but it is the person
living with the condition 24/7 who is the expert.”

She agrees that some health and social care professionals find it
difficult to engage with palliative care users but says they need
to overcome this because users do not want to be treated with kid
gloves, despite being ill. When Paine has given talks to
professionals about changes that are needed, she has received a
constructive response: “Most people have been interested that
someone in my condition would come along and talk to them so they
listen.”

Paine would like people to have equal access to all palliative care
services regardless of their condition. She wants a service user
support and advisory group to be established in every county.

She calls on the government to properly fund palliative care
services as far too many rely on charities for support.