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Getting Polly’s Voice Heard
The Court of Protection has awarded Polly a ‘welfare deputy’ to help ensure her values and beliefs are respected

Throughout her working life as an advocate for mental health service users, Polly campaigned for person-centred care that recognised each person’s individual values and beliefs and supported their right to make their own decisions about their lives. She was particularly passionate about the importance of respecting people's choices at times when they are unable to communicate those choices themselves – she often discussed these principles with colleagues and friends, and, as part of her job, worked on a leaflet called "Getting Your Voice Heard".

After Polly’s accident, we were dismayed that decisions about Polly’s treatment were being made without taking into account her values and beliefs. We also discovered that, contrary to common belief, ‘next of kin’ actually cannot neither consent to, nor refuse treatment, on their loved one’s behalf. This meant that doctors were sometimes making decisions about Polly’s ‘best interests’ without considering her as an individual

We believe Polly would have found this situation utterly unacceptable. In the absence of being able to speak for herself, we know that Polly would want someone who knows and loves her to advocate for her. Her partner, sisters and parents discussed the best way forward and together petitioned the Court of Protection to appoint Jenny (Polly's younger sister) as Polly's welfare deputy.

Applying for welfare deputyship is a lengthy and difficult process, and 80% of applications fail. So we are delighted to report that: We won our case! This means that Jenny now has a legal right and obligation to represent Polly’s views in relation to issues such as medical treatment. It will help us all to advocate more effectively on Polly’s behalf, register our concerns and try to create change.

Our experience leads us to urge EVERYONE to think, NOW, about how to protect themselves and their loved ones should they lose the ability to make decisions for themselves. This is a cause Polly felt very passionate about, and we would like to honour her by ensuring that other people take up the challenge too

Throughout her working life as an advocate for mental health service users, Polly campaigned for person-centred care that recognised each person’s individual values and beliefs and supported their right to make their own decisions about their lives.

Polly believed passionately that the medical profession should respect people's personal choices - a view that, in typical Polly fashion, she sometimes expressed in cartoons (see her cartoon on the right). She was particularly passionate about the importance of respecting people's choices at times when they are unable to communicate those choices themselves. When you are ill, you can discuss treatment options with your health care team and then make your own decisions about your care based on that consultation. But if you are judged to have a severe mental illness or are admitted to hospital unconscious or with serious brain damage (e.g. from a car accident or a stroke) you may be judged unable to make your own decisions (in legal terms, you ‘lack mental capacity’). In those circumstances the medical team make the decisions for you, based on what they consider to be in your best interests. Polly wanted to empower people to make their own decisions – and often discussed her principles around this with friends, colleagues and family. The Mental Capacity Act 2005 makes this possible and the government has issued guidelines about writing 'Advance Statements' that can set out which treatments you feel you would or wouldn't like to receive should you lose mental capacity in the future.

As part of her job with the Service User Involvement Project at Interlink, Polly worked on a leaflet called "Getting Your Voice Heard" giving people information about how to make an Advance Statement (also sometimes called a Living Will or Advance Decision) - "a record of your wishes and preferences for your care and treatment should you lose the capacity to express your choices at any time."

Polly is now in just the situation she helped others to prepare for - but, ironically, she never got around to completing an Advance Statement herself. She didn't expect to suddenly be unable to express her choices. This means that, ever since her accident, her health care team have had the right to make decisions about her care, based on their view of what is in her best interests. Especially in the early days after Polly's accident we were dismayed to find that the professionals caring for her sometimes seemed to assume the right to determine Polly's best interests without taking Polly's individual values and beliefs fully into account.

We believe that Polly would find this situation utterly unacceptable. She would expect proper representation. She would want someone who knows her values to represent and advocate for her. In order to honour Polly’s wish to have a say in what happens to her, her partner, sisters and parents discussed the best way forward and together petitioned the Court of Protection. We are pleased to say that Jenny (Polly's younger sister) has now been appointed as Polly's Welfare Deputy. This means that Jenny now has a legal right and obligation to represent Polly’s views in relation to issues such as medical treatment. It will help us all to advocate more effectively on Polly’s behalf, register our concerns and try to create change.

It is easy to assume that the 'next of kin' have rights to represent, and the ability  to protect, a loved one’s wishes – however, this is not automatic. Without a written advance directive (or someone designated with Health and Welfare 'Lasting Power of Attorney' next of kin have the right to be consulted but are not legally able to consent to, or refuse, any treatment. 'Best interest' decisions lie entirely with the professionals. Getting Welfare Deputyship is expensive and difficult - it usually takes months and 80% of applications fail. Even with Polly's Welfare Deputyship in place it will never completely substitute for an advance directive.

Polly encouraged others to write Advance Decisions - and we believe she would do so even more strongly today.
This is why we’d like to encourage everyone to think about writing an Advance Directive
Downloadable samples are available from the website links below.

Polly’s leaflet, and the Sample Advance Decision based on it, are designed especially for people who use mental health services. Other organisations have put out information and sample Advance Decision forms which you can download from their sites.