I have attended the King’s College Hospital Sickle Cell Support Group meetings without fail since August and I think Friday’s meeting was the most informative I’ve attended to date. Thank you to everyone really. The weather wasn’t ideal and you all could have opted to stay in the warmth and comfort of your homes but you braved it and came out in your numbers and actively engaged and contributed to the discussions. On behalf of my colleagues from Kings College Hospital and the South East London Sickle Cell and Thalassaemia Centre, we say a big thank you to you all. We appreciate you, your commitment and contribution to the group. Being the only non medically qualified member of the team, I do find the meetings informative and I always learn a thing or two about sickle cell which then helps me in the way l go about my welfare support and advisory role.
I think you would all agree with me that we have a long way to go in educating society about sickle cell, even professionals already working in healthcare such as our GPs whom one would have thought would be quite knowledgeable about sickle cell. From what some of you said on Friday, they clearly are not. This awareness battle clearly goes on so let’s not give up.
The second big thing for me was the question of, how to keep well. You all spoke passionately about this and shared your stories about what works for you. Even those of you who are in extremely good health and haven’t really experienced crisis in any shape or form, I think went away with some knowledge of how important it is to look after yourselves in order to reduce the risks of crisis and ill-health.
One thing that stood out for me was that of nutrition. I see people everyday who tell me they do not have appetite and therefore are not eating at all. If they do eat, it is something that is not good for their health at all. Let’s just call it junk food for now. Junk food seems to be all they can keep down and that’s really unfortunate and really bad.
As one of you said, the thing to try and do is that whether you have appetite; whether you are feeling hungry or not, just eat. Each meal time, eat a bit more and a bit more until your eating habits begin to improve. You still might not feel hungry but you have to keep eating. Please eat healthy food, by the way. No junk. Eat fruits, vegetables, drink water at room temperature with a bit of lemon squeezed into it. Water from the fridge is not a good idea at all; it’s too cold.
Follow up hospital appointments are very important because sickle cell clinicians are specialists who are very good at what they do. They would do specific blood tests that your GPs won’t do. These tests help identify changes happening inside you before they become annoying problems, so follow up appointments are important. Whatever your frequency, it is for a reason so stick with it religiously if you can. A few of you actually spoke about the need for this level of commitment with follow ups and adhering to every advise you are given and it is working wonderfully for you and this is evidenced in the fact that you are in very good health and haven’t had crisis for many years.
As a welfare support advisor, majority of things am told are pretty challenging and heartbreaking stuff, so it was quite heart warming for me to hear a lot of good news stories for a change.
In terms of all the issues you have with welfare benefits, the bad news is that government policy is most likely going to make these problems a lot worse than they already are. However, if you plan your benefits journey carefully then it won’t be so bad. First thing you need to do is to ensure that you get advice from someone who understands the complexity of benefits. Keep records of your hospital letters, test results, discharge notices etc and a diary or a log book of all the challenging moments you go through. When it comes to explaining how your condition affects your ability to do simple day to day activities reliably, this diary or log book would come in handy. This actually becomes part of the evidence you would submit with your benefits application forms. If you have this level of detailed evidence, it would be a lot harder for DWP to turn you down for the benefits you are entitled to. One thing that is a serious hurdle with benefits at the moment is the medical assessment. Please take this seriously because the assessor’s report is what decides the outcome of your benefits in most cases.
Let me just finish this off with a massive thank you to all of you. I’ve been with the South East London Sickle Cell and Thalassaemia Centre for just over a year now and I’ve become friends with many of you and I truly appreciate that friendship. I salute you all for opening your hearts to me and trusting me with your innermost thoughts most of the time. All the issues we have worked on and all the successes we’ve had, we achieved together. I couldn’t have done it alone so thank you. It really has been quite a learning curve for me; one that I’ll never forget. Thank you all and have a wonderful Christmas and a very happy new year. See you all in the new year. God bless.
posted from: sicklecellwelfareforum.com