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Reginald Hall! Reginald Hall’S Story Is Certainly an Uplifting One

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Reginald Hall! Reginald Hall’S Story Is Certainly an Uplifting One MDS Newsletter Supporting Patients with Bone Marrow Failure ISSUE 8 - May 2018 95 and happily married Reginald Hall! Reginald Hall’s story is certainly an uplifting one. Reginald told that blood transfusions are the only option, and even is an MDS patient who has been a member of MDS UK then, not all are transfused to an adequate level. We would Patient Support group for quite some time. Lately we like to think that the calls we receive are exceptions, but we received a couple of letters from him and he allowed us to don’t know for sure. These issues keep coming up and we share them with our members, both on the website and in keep explaining, educating and empowering patients as to this newsletter. Despite being 95 years ‘young’, Reginald their rights and options for better care. still keeps busy by doing all the cooking, trying to keep the place a bit tidy, looking after his disabled wife and Maintaining good quality of life for patients and caregivers is sorting everything else out. He even finds time to read our necessary to ensure independent living as long as possible. newsletter! We were so impressed – and thought it was In Reginald’s case this is even more important, as he time to acknowledge and celebrate this wonderful couple, also looks after his wife. This too is not untypical of MDS who have been happily married 73 years. households, where most people in this age group will live with more than one long-term medical condition. Ensuring Why did we want to make this point? that Reginald and his wife stay in their own home, relieves Age 95, Reginald belongs to the 52% of MDS patients the burden on care homes, and reduces the need for more in the 70+ age group (based on our own patient survey). full-time carers. It also means that family can visit and stay – Along with his wife, Dorothy, they are the true embodiment which would otherwise be impossible in a care home. of why quality of life must be the main objective in the care of MDS patients. Curative treatment options in MDS are still extremely limited, but quality of life type improvements are Based on the MDS UK helpline queries, patients in this age available (see our article by Dr Chris Dalley on page 9) group are not always receiving the full benefit of supportive for any age and any stage of the condition. care options and they aren’t always considered candidates for active MDS treatment or clinical trials. Too often, they are Continued on page 2 www.mdspatientsupport.org.uk MDS UK PATIENT SUPPORT GROUP NEWSLETTER MDS UK PATIENT SUPPORT GROUP NEWSLETTER Reginald Hall: 95 and happily married - continued... th Welcome to the 8 edition of the Research and clinical trials such as the REDDS £100 donation. In the letter, Reginald said: “My sincere study is looking at exactly that area – assessing ‘Thanks!’ to you and all the staff for the newsletters, our MDS UK newsletter quality of life in patients with MDS by transfusing them chats on the phone with all the advice and help you have according to two different haemoglobin levels (a restrictive given me. transfusion strategy or a liberal transfusion strategy) and This newsletter is dedicated to some of the many people patients think he is fantastic – we could not agree seeing whether those transfused more regularly cope “I am still sorry to say, due to my poor health and invalid who go to extraordinary lengths to support our work – more. Thank you Pavel. better overall and over time. The aim being to avoid the wife, it is impossible to attend any of the meetings, I wish and those who actively seek to involve us in their work As this edition of our Newsletter is dedicated to ‘the dips in energy between transfusion intervals. I could, as we don’t have the chance to get out of these – to ensure the voice and opinion of MDS patients is truly importance of quality of life (QOL)’ – we will also briefly four walls. I have just had another fall in fact two months represented. mention the projects and people we work with: Quality of life matters at any age – as the following ago, the bruises have just about gone, but I still have a amazing patients will equally agree. bump on my head, but all the doctors can’t decide what The EHA Scientific Working Group on QOL have to do. developed a new tool to measure aspects of QOL in Be it MDS Patient Bev Nye (here with wife Janet), patients affected by a haematological malignant disease: who both help run our Derby MDS UK local group, My wife Dorothy has just had a birthday, so we are now HM-PRO which stands for Haematological Malignancy – or our tremendous committee member, trustee and both 95 and 73 years married! We do have a cleaner, Patient Reported Outcome. This tool will be available via Oxford coordinator hairdresser and chiropodist come to our bungalow, but smart phones, tablets, and on paper – and patients will Claudia Richards (on I still do all the cooking etc. trying to keep the place a fill answer a short simple set of questions relating to their very regular blood bit tidy and sorting everything else out, it is hard work day-to-day QOL. It is in the final stages of being tested transfusions 2x month). although my wife has a carer morning and evening. I still – and we will report more soon on this important work have lots to do, she has a walker in the bungalow and a we have been involved with from the start, thanks to the Or also Christina, a wheelchair when off to the day centre twice a week. Sorry working group, Professor Sam Salek, Dr Esther Oliva long-term MDS UK about the moaning and many thanks to all concerned.” First – hats off to the wonderful haematologist Dr Kavita and Dr Tatyana Ionova. member who tries Raj, who works at King’s College Hospital and Guy’s in to keep active and Reginald’s amazing kindness Another QOL clinical trial is under way in Sheffield, led by London, for running this year’s London Marathon. We’ve fit playing golf when Immensely grateful to Reginald for his words and his Dr Harpreet Kaur, looking specifically atMDS Watch & had a fair few marathon runners to date – but never possible. unexpected donation, we replied with a note. A short time Wait (W&W) patients. The W&W status is generally difficult a MDS haematologist – and we are utterly grateful to afterwards we were amazed to find yet another letter from to cope with, as it is difficult for patients to be given a Kavita for putting herself through this ordeal, on top of Or Blossom, a very Reginald on our post box, with an extra £100. Reginald shocking diagnosis of MDS, yet no treatment. The trial will her seriously busy job. Kavita has already shown such long-term MDS patient, said in his second letter: be looking at ways to ease the burden of coping with this tremendous dedication to patients and to MDS UK – and who benefitted from status by providing better support to respond to patient’s this run shows she stops at nothing to help patients and a stem cell transplant “I hope that you and the staff are keeping free from needs. MDS UK is fully involved in the development of this their families. Thank you so much! many years ago – which prompted her wish to set up a coughs and colds. The two photos are from our 70th important clinical trial. special patient group for very long-term post-transplant wedding anniversary, we now have 3 lovely photos of the The other special thank More on this in our MDS UK Survey on p17. patients. Queen, the other is one I picked up while sorting them all, you goes to haematologist it is memories of my conscript call when I tried to join the Dr Pavel Kotoucek – for Lastly, our involvement in the REDDS - transfusion A further area to explore – to add quality of life for MDS Air Force, but was told “No”, it’s the pits for you or a term consistently ensuring that thresholds study, mentioned already and led by Dr patients – is the possibility of having treatments at home. in jail, very dangerous. We have been marching at the every single of his MDS Simon Stanworth in the John Radcliffe Hospital Oxford, Several pilot studies are under way to set up the delivery Albenas arboretum with all the veterans for many years patients gets introduced who is eager to keep working with us. Understanding of azacitidine at home. Birmingham, and two areas in and we are very friendly with the organizer and admirals, to our support group. His how to best use red cell transfusions and improving the Scotland have set up a successful scheme run by mobile many Lords, etc. failsafe tactic: 1 minute experience of patients on regular transfusions is a key nurses or community nurses. Cardiff may have options is spent in consultation, part of the treatment aims in MDS, and the focus of this too – but not yet implemented. We will share these best I think again that your idea of printing things and photos looking at our MDS UK ongoing research. practice examples via our support group. is a really nice idea: “Thank you!” You deserve another website, and asking Our call is for any clinicians, researchers and donation.
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