The Scoping Exercise into Hepatitis C infection was the brainchild of Alex Neil MSP when he was Cabinet Secretary for Health and Wellbeing in the Scottish Government. (He has since moved into a new role and his place has been taken by Shona Robison MSP.) The need for a Scoping Exercise came out of a meeting between Mr Neil and Philip Dolan, Convener of the newly formed Scottish Infected Blood Forum, who was accompanied by other SIBF members.
Philip was explaining the effects of living with a viral infection caused by contaminated NHS blood. It became clear that there was a lack of hard evidence, especially from infected people themselves. And so the Scoping Exercise was born.
Much of the Scoping Exercise was designed to capture the problems people faced, their real experiences, and how they and their families were affected. From all the received feedback to the final report of the Scoping Exercise, it was successful in achieving – for the first time ever in Scotland – a platform for the victims’ voice to be heard.
What works for you?
The Scoping Exercise, however, did not only focus on everything that went wrong. A whole section was devoted to what people were doing to self-manage their condition; how they were trying to live well despite their infection.
People were asked about what helped them to make the best of the situations they faced. Some responses were about coping with an uncertain future by talking to friends and family. Some people were so much in despair that they had to admit they were barely coping to get by at all. But others were able to offer some practical suggestions about what seemed to work for them.
Ideas ranged from the expected (like eating a more healthy diet or getting some form of exercise), to the more unconventional (like acupressure or even getting involved in campaigning).
In order to develop the concept of living well, here are two specific lifestyle choices (changes) that have been reported as being especially beneficial. They have been selected as useful examples of how the opportunities that will hopefully arise from the Contaminated Blood Financial Support Review Group might be seized.
One of the Review Group recommendations is to provide discretionary financial support to help people cover the cost of specific needs, including purchases that will help them better self-manage their health.
It has been well said that ‘you are what you eat’ (and drink). We hear a lot these days about the dangers of processed food. Then we are told that much of the benefit of our good food choices is lost by the cooking process. And what’s all this about ‘superfoods’, or the latest diet that is high in this, or low in that?
Juicing is not a new phenomenon, but it is enjoying a deserved rise in popularity. Basically it involves drinking the juice from fresh vegetables and fruit, in their raw state, all prepared in a ‘juicer’ which extracts the live nutrient and mineral rich juice and separates it from the non-digestible fibre. There are loads of different recipes to suit most tastes. The trick is to get the right mix of leafy greens and tasty fruits. You can add concentrated proteins and nutrients, sweetening it with something natural like honey and use it to replace a main meal. They can be surprisingly filling, while a well prepared juice will contain much less than the calories of a normal meal and provide an energy boost to boot.
Maybe this all sounds too far away from what you like to eat. But there are thousands of ordinary people who eat ordinary things who occasionally include juicing as part of their eating habits. It’s not either/or.
Juicing acts like a natural detox. It keeps all the goodness in, and when you are on a ‘juicing day’ it can be supplemented by eating more traditional foods like chicken, eggs, nuts (so long as they are not ‘contaminated’ by the way they are prepared). The power of freshly extracted vegetable and fruit juices should not be underestimated.
The main one-off cost is the juicer (a sort of high-powered blender, but better than that). A case could be made for a discretionary award to cover this, then the rest is up to you to make it work to get the results you want: more energy; weight loss; improved skin condition; sharper brain functioning; or just a sense of, well, ‘wellbeing’.
Doing the gym thing
It’s never been easier to find a local gym, especially if you are near a reasonably sized town. It might surprise you to know that more and more gym users are not the typical bulked up macho-men. In quite a short period of time you could feel the benefit of getting fit.
It is a good idea to get a personal trainer, at least at the start, so as to personalise your programme (and also link gym work to good eating).
Of course this activity comes at a cost, but it is anticipated that a relatively small discretionary award to cover costs will far outweigh the costs of increased hospital visits, prescriptions and supported travel.
Of course, any major change to eating or activity levels should be discussed with a medical professional first. However, the experience is that they will be strong advocates for what they would see as preventative action.
A project idea
With this in mind, discussions have started within SIBF circles to develop a project concept that builds on what people say works for them. Here is an opportunity to support each other by developing a new venture specifically to suit people affected by Hep C. So as they say, watch this space.
And finally, if you want to know more about what people said works for them as ways to cope better with their viral infection, read the Scoping Exercise final report at 7.10 (Section J) starting from page 72.