“Self-management has made life bearable again, but it’s impossible without money”

Written by: Catherine Hughes, Involvement Network Member, The ALLIANCE

Published: 10/10/2019

Activist and former healthcare professional Catherine argues that people on low incomes need financial support to manage their health.

In a compassionate society we all expect our NHS will be there for us in our time of need. However, for some, the costs of living with health issues is a burden. Reducing these costs could make a real difference – helping people to improve their quality of life and maximise their opportunities and potential.

People living with long term conditions and those who are unpaid carers are particularly at risk of being swept up by the rising tide of poverty.

Life is very unpredictable and anyone at any age can be dealt a blow to their plans and dreams and can find themselves struggling to stay afloat. It is particularly difficult and costly if you develop health issues that affect your ability to continue in paid employment and have to negotiate the benefits system.

This week the Health and Social Care Alliance Scotland celebrates Self-Management Week and the Poverty Alliance encourages us to think about the solutions to poverty during Challenge Poverty Week (this link will take you away from our website). It has made me reflect on many of the issues that can be associated with health and poverty and in particular some of the issues that people may experience trying to self manage.

I have several complex long term conditions that have been difficult for health professionals to treat and I have fortunately learned to self manage many of my conditions over the 30 years since I was initially diagnosed. I experienced the grief and many frustrations of having my dreams shattered as I could no longer continue in employment as a health professional which was something that I had worked extremely hard to achieve.

I was successfully helped by the dedicated hospital staff at the NHS Centre for Integrative Care (this link will take you away from our website) where I was empowered by being taught the various holistic skills that I needed to help me to better self manage my conditions. The medications that are normally prescribed for my conditions gave me serious side-effects so I was taken off them. As a direct result of using holistic methods, since being diagnosed 30 years ago, I estimate that I have saved the NHS in excess of £250,000 as I’ve cumulatively only been on the medications for 12 and half weeks. I had previously spent over a year in hospital in total as an inpatient and I have now not been in hospital as inpatient since 2008. Most importantly, self management has made my life more bearable as many others also testify to.

Self management, however, costs money and at present in Scotland although there is Self-directed Support many people are not eligible and there is not a fund to help people personally fund their self care.

Despite having several incurable conditions my wellbeing and health is important to me and over the years I have spent a considerable five figure sum towards self managing my health and improving my overall wellbeing. In doing so, I have had to make many sacrifices as I struggle with limited means due to being confined by the shackles of poverty. I have not been on holiday for over 11 years and can’t participate in many of the opportunities that others can take for granted. I make choices daily trying to prioritise my wellbeing. It would be easier if a universal basic income was available to everyone, if people received the support they were entitled to and if social security benefits were enough to meet people’s needs.

It is costly eating the foods that my consultant recommended to help manage my auto-immune conditions and serious digestive disorder. The vitamins and supplements advised by my health professionals are not available on the NHS and are costly. Many other tools were prohibitive in the long-term such as Tai-Chi which was recommended due to my joint and balance issues and has many other benefits to help improve my general health and wellbeing.

It is time for a rethink. We all deserve to live a dignified life free from the grip and worry of poverty so that we can all fulfil our potential. The Scottish Government support ‘Realistic Medicine’ and want to encourage shared decision making with health professionals to maximise our wellbeing and see self management as important. However, we must ensure that people have access to adequate financial resources and support them in this endeavour so they are able to embrace self management.

In the UK our healthcare is supposed to be free but there are many additional costs that can cause people to fall further into debt and be prohibitive. It was welcomed when prescription costs were eradicated in Scotland, particularly for those requiring multiple medications. ‘Realistic Medicine’ advocates reducing many medications and aims for people to utilise a range of holistic approaches and to be more involved in their healthcare and self-management. However, to do so effectively adequate funding needs to be available. If our NHS is to benefit from the cost savings that result from people self managing like I have, and if health inequalities are to be effectively addressed, individuals must be able to access a personal self-management fund that will help them to participate in the self-management approaches advocated by their health professionals. This will be a small sum for our Government to pay given the many benefits to people’s health and wellbeing, our NHS, and our society as a whole as people will then be able to fulfil their potential.

I believe the access to a personal self management funding would be beneficial. Do you have any suggestions that will encourage more people to self manage and help to address the concerning rising numbers of people affected by poverty?

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