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Taking control

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Life can be unpredictable, and having a long-term health condition brings with it even more uncertainties. As an ex-palliative nurse, and as someone living with a neurological condition herself, Diane Shenton knows this more than most. Here she explains how she found reassurance in taking control and proactively planning for her future

None of us know for sure what the future holds for us. Some of us may be fortunate and experience few health problems, while others may have more difficulties.

Regardless of this, in my view we all have two things in common. Each of us is born and, regardless of our health status, none of us will live for ever!

Most people plan for parenthood and yet few of us plan for end of life. Perhaps this is because it is an emotive subject and one that we do not like to dwell on. Or maybe we do not think too much about exiting life simply because there is not enough information around and what there is can be difficult to understand.

Whatever our reasons, in my experience planning ahead can be very reassuring. I take great satisfaction in making my own choices rather than allowing others or my condition to control me.

Planning ahead

For example, making my will has given me a sense of satisfaction, knowing that my possessions will be dispersed according to my wishes.

I have also chosen to complete a Lifebook. In this, I have documented important contact details such as personal wishes and preferences like suggestions for my own funeral. Organisations such as Age UK supply this type of booklet free of charge, but some people prefer to develop their own.

This is also sometimes referred to as a statement of preferences and wishes. It is not legally binding, but if there are people looking after me, they would be required to take my stated views into account as part of any best interest decision.

I have also organised a Lasting Power of Attorney (LPA). Prior to 2007 this was called an Enduring Power of Attorney in England, Scotland and Wales and is still called this in Northern Ireland.

This is a legal document used to choose who I want to manage my affairs and allows me to name a person or people who I trust. Having an LPA is a safe way of maintaining control over decisions made for me.

Information, documentation and registration forms are provided by the Office of Public Guardian for people living in England, Wales and Scotland and the Office of Care and Protection for people living in Northern Ireland.

I completed my registration online. If you don’t have a computer or printer the documentation can be posted out to you. It costs around £110 per LPA. People on means tested benefits may get a reduction or complete exemption of this fee, which is explained on their website. If you prefer, you can ask a solicitor to help with this, but this will add to the cost.

I thought it was important to organise an LPA while I have mental capacity. This is the ability to understand, weigh up, retain and communicate decisions. If not, and I lose mental capacity, other people may need to apply to the Court of Protection to be able to make decisions on my behalf. This can be more costly than the LPA fee, and can be stressful for relatives, friends and carers.

There are two types of Lasting Power of Attorney. AN LPA for financial affairs and property enables my attorney ( I chose my husband) to make decisions for me both when I have mental capacity and when I lack mental capacity. For example, my attorney can make decisions about paying bills, dealing with the bank, collecting benefits and so on. If I do not want my attorney to have this control while I have mental capacity I can put a restriction on this within the registration documents.

The second type of LPA allows my attorney to make decisions on my behalf regarding health and welfare, for example, decisions on treatment, care and medication. There is a section where I can state what I want, or do not want to authorise my attorney to do, such as giving or refusing consent to life-sustaining treatment.  

Talking to health professionals can help you fully understand decisions made and it is important to communicate wishes to those involved so they are aware of my preferences and understand where important documents can be found. And if I revisit my options and change my mind I can do, providing I inform those involved and alter the appropriate documentation.

Organ and tissue donation is a subject which I have also considered. This can be arranged via the NHS organ donation register or with a chosen organisation. This, like leaving a legacy to a chosen charity can be of great benefit to others, as well as giving some purpose to life.

Planning my future care

As a retired palliative care nurse specialist myself, I am comforted knowing that these services are available to me if required. Palliative care can offer physical, emotional, social and spiritual dimensions to care. It can focus on my quality of life, and help me control my symptoms.

Health care workers such as GPs, nurses, occupational therapists, social workers, physiotherapists and support workers offer palliative care on a day to day basis.

People with more complex needs may require specialist palliative care provided by health care workers who are highly trained and specialise in palliative care. These teams are located within the community, hospitals and hospices.

Although facing some of the topics in this article can feel at the time a little uncomfortable, taking a proactive approach, making decisions and putting things in order has certainly helped me to feel in control and given me some reassurance and peace of mind.

 


This story is part of the May 2016 issue of Open Door. Read the whole issue (pdf 4.3Mb). Sign up to receive the latest news every quarter.

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