MSA Trust Members Magazine | issue 53 | October 2018
Keeping all lines of communication
open
CONTENTS
Welcome to issue 53 YO UR STO R IE S - BAC K TO THE SK IES - PAGE 6
Sarah’s Wood
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Exploring Communication Needs
04
Your Stories
06
Research Update
07
Speech and Language Therapist Q & A
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In Memory
10
Support with Benefits
11
Finding a Catheter to Suit You
12
Fundraising Roundup
14
Supporting and Helping Each Other
16
Support Group Directory
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Voice Banking
18
Our Corporate Supporters
19
Christmas Cards
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C H I EF EXE CUTI V E O FFI CER:
ALL ENQU IRIES TO OU R ADDRESS:
Karen Walker
Multiple System Atrophy Trust 51 St Olav’s Court City Business Centre, Lower Road London SE16 2XB Tel: 0333 323 4591 www.msatrust.org.uk
M SA NEWS E DI TO R S :
Andy Barrick Emma Rushton
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warm welcome to your Autumn MSA News. In this issue we focus on communication, something which members tell us is of vital importance. As ever, we also have lots going on. Jane Stein, our new Advocacy Officer, has been supporting a growing number of people with a range of non-medical issues. These include benefits, accessing equipment and grants and liaising with carers organisations. Look out for her article on Page 11. We also welcome Marina Frias Padron our new Services Assistant and Henry McGinty our new Community and Events Fundraiser. No doubt you will be speaking to them if you call us in the future. We know it seems early, but please do look at our Christmas card order form on our back cover. The Trust relies on these cards to both support Fundraising and to raise awareness, so buying them really helps us. Finally, we were successful in getting an environmental grant from the City Bridge Trust. They noted our existing good work but proposed other things that could help us become carbon neutral. We will take these forward and if any of you have any other suggestions, please do let us know. With best wishes, Emma and Andy. msa news
Registered Charity Number 1137652. Scottish Charity Number SC044635. Company Number 7302036 We endeavour to ensure the accuracy of articles in MSA News. Please note, however, that personal views and opinions expressed are not necessarily endorsed by the Trust. Designed by Base Media www.base-media.co.uk. Printed by INQ Design 020 7737 5775.
TRUST NEWS UN VE IL IN G OUR N E W SA RA H ’S WO O D S I G N
Sarah’s Wood Summer Event Karen Walker, CEO of the Trust, reflects on our Sarah’s Wood summer event and outlines arrangements for the winter tree planting dates. “What an incredibly hot, dry summer it was and how clearly this was demonstrated at our summer event at Sarah’s Wood. We gathered at the Wood on a Saturday in July to unveil our new signage, kindly donated by Sarah’s sister, Margaret. Not only will the sign mark the Wood, we also hope it will encourage people walking by to find out more about MSA. Our host, Hugh Matheson, explained that although the wood looked parched, the Oak trees would be conserving their energy in their base root and would be working hard to stay alive under such harsh drought conditions. This certainly appeared to be the case as after my return visit in August (and following lots of restorative rain) many green shoots were spotted on the saplings. As you can see we had a lovely afternoon of conversation, tea and cake in the garden at Thoresby Park. Many thanks to our volunteer Stella Herbert, her grandchildren and members of the Sherwood Rotary Club, who provided cake and served tea to our guests. Your help
was very much appreciated. At the gathering the possibility of ‘naming’ a stone or brick was discussed amongst those who have planted trees in the wood. These would be laid into a path which would enable people with MSA to get deeper into the site and enjoy the tranquility that being in Sherwood Forest offers with their
friends and family. The stone would have a person’s name on it, but no other information. They would be of a standard to be wheelchair accessible and would be smooth to ensure all could access the site. At present we are preparing costs and logistics, so please bear with us and we will get information onto the website soon.” msa news
In the meantime, we do hope that many of you will come along to our tree planting days this winter and put a sapling in the ground. The planting dates we are offering for this year are:
24th November 2018 & 25th January 2019 Registration for these and information about how to access the Wood at other times of the year, is available on our website www.msatrust.org.uk/get-involved/sarahswood.
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SUPPORT FOR YOU S U P PO R TIN G CO M M U N ICATION D IFFICULTIES
Communication Matters Gradual but growing difficulties in communication, both speech and non-speech, can be a common theme for people living with MSA. Jill Lyons, our MSA Nurse Specialist, looks at how support can be provided if this starts to become an issue for you.
P IC TU R E CO U R TE SY OF AB ILIA
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any people with MSA experience difficulties in communicating with others. Speech impairment can be an issue, as can the fact that communication can become extremely tiring and take a lot of effort. Whilst responses to these issues are invariably specific to the individual, there are a range of options that might help. The very first step if you are having difficulties is to be referred to a Speech and Language Therapist (SLT). Our interview with Anna Pandanjac on page 8 explains how to go about this but essentially you should ask your GP or healthcare professional to refer you. Your SLT will be skilled in assessing any individual challenges you may have and will be able to suggest potential solutions. For example, they may recommend things that are specific to you such as making the most of your body language, pointing, signing and facial expressions. They may also suggest vocal exercises that you can practice to make your speech clearer and stronger. 04 | msa news | issue 51
There are other simple techniques that can facilitate better speech communication. For example, you may find that you have times of the day when you feel more able to talk, so make the most of these. A quiet and welllit environment where people sit at the same level can help, as can making sure there is ample time to speak about the things that are important without rushing or feeling under pressure. There may also be low-tech and high-tech communication aids that can help. Low–tech aids include simple, non-electronic tools such as word or image pointer boards, notepads and whiteboards. Have a look at a members’ communications booklet on our website for a good example - www.msatrust.org.uk/ support-for-you/living-with-msa/communication. High-tech communication aids include speech-totext and text-to-speech communication devices and software for smartphones, tablet computers, laptops and personal computers. Some equipment can also be
SUPPORT FOR YOU SUP P ORT I N G COMMUN I CAT ION D I FFI C U LT I ES
controlled by eye-gaze, although this can sometimes be difficult for people with MSA. Augmentative and Alternative Communication (AAC) services can be funded by Health Authorities. They may also integrate with other services that use technology to allow people to control other devices such as computer equipment, TV controls and light switches. Below outlines the process to see if you would benefit from a communication aid: •• Your SLT and any other relevant professionals should undertake an assessment and offer any suitable communication aids they offer locally •• If they feel you would benefit from referral to further AAC services, your SLT should complete this referral •• If accepted, a member of the AAC team will visit you and undertake an assessment of your needs •• They will write to you with the results of this assessment •• If they have recommended any loan equipment for you, they will visit again and work together with you to train and assess you using the equipment •• If suitable, they will provide loan equipment for your use, and review this regularly to check that your needs are being met. Our MSA Nurse Specialist, Emma, recently sat in on an assessement. She said: “I observed this process with a person with MSA; a full assessment of needs was performed, and equipment controlled by a button, or switch, recommended and tried. After further assessment, it was felt that rather than using a switch to control the speaking aid and environmental control equipment, some eye-gaze technology equipment would be more suitable. This was provided and assessed, and the person with MSA is now able to control the TV channels and music player, turn light switches
on and off, and communicate using this specialist equipment. Such equipment can also provide the opportunity for the user to make phone calls, browse the internet, read e-books, or listen to audiobooks.” There is no ‘best’ type of communication aid as individual preferences, abilities and needs can vary. Assessment by a qualified SLT is important as some aids can be very expensive and will not suit everyone. There are new developments with communication aids all the time. Communication Matters run roadshows that offer the opportunity to look at the latest equipment from different manufacturers. You can find out more about these here www.communicationmatters.org.uk/page/road-shows. We are also able to loan out communication aids called Lightwriters which are helpful for some people. A Lightwriter is one piece of equipment which might be recommended after an SLT assessment. In certain circumstances we can offer help with small grants towards the cost of communication equipment. Some people find it useful to have care and daily life preferences in a booklet or folder to save repeating information. This is useful for professional carers to help them get care right and it may help if the number of carers is limited so they can get to know the person and their communication techniques better. It is important to remember that not all communication is verbal or text based and people communicate in other ways. Family members and friends are often able to understand each other with minimal words or text and this is really important when verbal communication is difficult. msa news
If you have any questions about anything included in this article please contact your MSA Nurse Specialist at support@msatrust.org.uk.
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MEMBER STORIES A R T I C L E BY M AR K F IDL E R
Back to the Skies
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aving been being right in front of your diagnosed with MSA face! Then it was time to in 2016, I never thought Flying was always my passion. take-off, the moment of I would fly again. That truth! We opened the Fifteen years as a commercial pilot was until a good friend throttle and sped down drew my attention to and with approximately 7,500 the runway. I shouldn’t ‘Aerobility’, the flying have worried, all was flying hours, I guess you would charity based out of OK, taking off was as Blackbushe Airport in call that fairly experienced. I have exhilarating as ever. Camberley, Surrey. After I was fine, half an hour flown Trilanders, Boeing 737s and one email was sent, I got later I found I could still a fast, simple response was latterly on Boeing 777s. hold a heading, hold an “we’ll get you flying attitude and altitude, again”. so very pleased. It felt One quick phone call wonderful to be airborne arranged a trip on a PA 28 Warrior (similar to the aircraft I again. had trained on in Florida, seventeen years before). I did some turns successfully, and I felt like a pilot I didn’t know if I could still fly. “Would the again. We landed uneventfully, and I taxied in, parked acceleration forces be too great? Had I forgotten what to and turned the engine off. do? How would I get myself into the plane?” It brought back a lot of good memories, from the All these thoughts raced through my mind, plus more. beginning of my flying career fifteen years ago. I had On the day, my instructor JJ was ultra-patient with me. done it... not a bad performance for a first flight post I have little mobility in my legs, so I got stuck half way up diagnosis. Next time I’ll do the landing and take-off. the wing opposite the door! You don’t have to be a commercial pilot to fly with How was I going to get in the cockpit? It all looked ‘Aerobility’ they can get you airborne at any stagetantalisingly close, the cockpit layout still very familiar especially absolute beginners. So, if this has been your after all these years. If required ‘Aerobility’ would have ambition, there is every encouragement, Aerobility will used a full hoist to get me in. My instructor, screwdriver completely support you and I thoroughly recommend in hand, was prepared to take the door off! No need, them. motivation drove me to find my way. “Aerobility strives to remove the barriers - physical I got in and settled down, everything was familiar, a and financial- that prevent individuals with any form of promising start. Finally, pre-flight checks done, it was disability from enjoying the thrill of flying” time to start the engine. I’d forgotten how loud it was (Aerobility 2018) - www.aerobility.com. msa news 06 | msa news | issue 53
RESEARCH F E E D B ACK F ROM OUR RE SE A RCH CO M M U NI T Y
Research Round Up With our funded projects all underway we have much to report in this edition. From the work of our MSA ABN Research Fellow, the Prospect study and other research studies, four of our researchers share their updates with you:
PROJECT 1
Professor Houlden, currently carrying out a study looking into the ‘Identification of Longitudinal Biomarkers in MSA’: “Collaboration has been established with the Institute of Neuroscience in Gothenburg, Sweden and the UCL Leonard Wolfson Biomarkers Lab for the project into developing wet biomarkers. At the moment we are focussed on recruitment and so far over 50 people with MSA have donated their blood. We are extremely grateful to all the participants and hope others will follow.” PROJECT 2
MSA Research Fellow, Viorica Chelban: “The PROSPECT-M study has reached its third year. Over 50 patients have joined the longitudinal arm of the study and over 90 patients are involved with the crosssectional study at the seven recruitment centres. We have started the MRI scans for the third-year follow-up. This is the first longitudinal imaging data that extends to three years that we have conducted to date. Once all the patients involved in the study have had their scans completed we will start analysing the results. In addition to the imaging data, we are assessing the natural history of the disease and early signs that can differentiate MSA from other synucleinopathies.”
PROJECT 3
Professor Pavese, was awarded funding this year to complete a MRI (Magnetic Resonance Imaging) project looking to improve initial diagnosis of MSA: The project had a short delay while a software update was implemented for the MRI PET scanner. While this was happening, the team were recruiting a Clinical Research Associate to undertake the study and develop the ethics application. In addition to this study, Professor Pavese has received a grant from Parkinsons UK to use a similar imaging approach in patients with REM Sleep Behaviour Disorder (RBD). This has great potential benefit for MSA, as he explains: “We feel that these two studies strongly complement each other and together, if performed in parallel, will significantly increase our knowledge of the early pathological changes occurring in these different types of synucleinopathies.” PROJECT 4
Professor Holton, based at the Queen’s Square Brain Bank, is conducting a study into ‘Understanding selective brain regional vulnerability in MSA’: “We are continuing our work investigating whether epigenetic changes, that may influence the activity of genes and thus alter the amount of proteins produced from the DNA code, are important in causing nerve cell damage in MSA. We have put together a team of researchers with complementary experience in this developing field and we are very pleased to welcome Dr Conceição (Sao) Bettencourt, who has been employed using this grant to work on the project. Sao has extensive experience in the field of MSA and genetics and she has the necessary bioinformatics skills to analyse further the data that we have already generated.” msa news
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SUPPORT FOR YOU T H E RO L E O F A S PEEC H AND LANGUAGE THERAPIST
How I help people Anna Pardanjac is a Speech and Language Therapist (SLT) working within an NHS Trust in the South East of England. Anna has been a qualified SLT for four years and is community based, which means she works in hospital wards, clinics, and visits people where they live. Here she explains her role and how she can help people affected by MSA Thanks Anna.
A N N A PA RDA N JAC, SP E E CH A N D L A N G UAG E T H E RAPI ST
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What’s the route you’ve taken to become a SLT?
Where do SLT’s sit within the NHS/ community?
I completed a four year undergraduate degree with Cardiff Metropolitan University and qualified four years ago. You’ll often find that most community based SLT’s have more generalised expertise working with a variety of conditions, although there are some that sit within a Multi-Disciplinary Team (MDT-a group of Health and Care Professionals) who focus on neurological conditions.
Some SLT’s sit within a larger MDT team which may consist of a Dietitian, Physiotherapist, Occupational Therapist etc. This is a great way of working as there is often an overlap between the roles of the professionals and it facilitates a collaborative approach to assessment and management. However, this isn’t the case where I’m based as we are spread across a large county. We do still liaise closely with the other professionals, but the difference is that we are not based in the same room. It all depends on the Trust that you come under as they all have slightly different ways of working – which can be confusing!
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How can people get a referral to a SLT? Any healthcare professional can make a referral to a SLT service, so this could be your GP, District Nurse or MSA Nurse Specialist.
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At what stage should people think about getting an SLT referral? I would recommend that you get involved with an SLT as soon as possible after getting your diagnosis of MSA if you have noticed changes in your communication or swallowing. You might ask for a referral if you notice changes in your voice or speech, or you’re having issues with swallowing certain foods or fluids. Another sign could be that you’re not able to finish all your food, are experiencing weight loss or are getting recurrent chest infections.
SUPPORT FOR YOU T H E ROL E OF A SP E E CH A N D L A N G UAG E T H ER A PI ST
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What will SLT’s do to support people with MSA? Initially an assessment will be carried out to identify any current needs. We’ll be looking at things like the consistencies of your food and drink and if these are easy to swallow. Education around swallowing and aspiration (which is when food or fluid has not fully cleared from the food pipe into the stomach and enters the lungs) will be given about how to look out for the signs and symptoms of this. We’ll look at how your communication may be affected and think about future planning for this. We can also help explore what might be the best communication aid option for you. This could be voice banking (see more info on page 19) or equipment such a Lightwriter or apps for a tablet. We would support you with learning to use the communication aid and can also create paper based communication aids if these are more suitable for you.
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What’s the average length of time you work with people? It completely depends on the person and what their individual needs are. If there are ongoing needs we would continue to work with you as long as needed but sometimes people just need advice on one particular issue, such as swallowing. However, again different areas of the country may work differently and give you a block of sessions. If you ever need a re-referral because things have changed then just go back to your GP or healthcare professional and ask to be referred again.
Is there anything friends and family can do to support people with speech and language therapy? If a loved one’s speech is affected then it’s easy for you to try and help by finishing sentences or guessing what the person is trying to say. However, it’s best to allow the person time to speak and respond in a conversation, try to reduce background noise and speak face to face to facilitate the communication. Part of an SLT’s role is to support family members too, so we can help with things like training for communication aids.
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What do you like best about your job? I like how varied the role is and that no two days are the same. We are lucky to work alongside like-minded health professionals. We are focused on empowering the person with their communication and swallowing problems and we aim to support them through providing education and advice to aid in their decision-making around how best to manage these issues. This is very rewarding.
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IN MEMORIAM R E M E M BE R IN G THO S E W HO WE HAVE LOVED AND LOST
In Memory Linda Warlow Dorthe Gibbs Robert Veness Kathleen Brennan Robert Cox Gareth Williams Debbie White Raymond Hall Janet Warrington Fred Purvis Irene George Rosemary Jones Brian Dalby Raymond Whitcombe Ron Emmerson
Alan Nicklin Ian Welsh Gordon Dunn Graham Carter Betty Osborne-Hewitt Derek Littlewood Gill Jones John Hockaday Catherine Russell David Jones Gillian Hastings David Coomes Jacqueline Copplestone Kathleen Hawcroft Malcolm Unett
Regularly supporting the Trust
Denise Precious Ellis Jenkins Mitchel Dunin Reinhard Werner Sylvia Kemsley Maureen Winter Veronica James-Thomas Daniel McNally Denise Thomas Razia Mir Naresh Sharma Ann Yates Robert Thompson Allan Davis Mavis Holland
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e are always very grateful for one-off donations to the MSA Trust which can make a big difference to our daily work. However, it’s regular donations that really allow us to plan and execute long term projects and give our work secure foundations. This is because we can be confident that you are committed to supporting us with your regular donation, both now and in the future. Setting up a regular donation is easy, we provide the Standing Order form for you to complete, sign and return to us. We can also Gift Aid all the money you donate if you are a tax payer. Setting up regular giving keeps our administrative costs to a minimum so more of your donation is used for our work supporting people affected by MSA. Another effective way to donate regularly to the Trust is through Payroll or Workplace Giving. This allows you to give a portion of your salary to us before taxes are deducted. This means we receive a larger donation at no extra cost to you. To find out how to set up payroll giving just contact your employer’s Human Resources or Finance Department for more details or have a look at our FAQ document on Payroll Giving for more explanation. To receive the document or the Standing Order form email fundraising@msatrust.org.uk or visit www.msatrust.org.uk/regular-giving. Whichever way you donate, please know that you are making a real difference to everybody affected by MSA.
msa news
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Elizabeth Brown Fay Fox Margaret Goodman John Vickers Colin Amery Neville Mayall Judy Eleanor Williams Brian Corry Colin Newbury Ron Jenkins Pamela Webb Ian North John Bayliss Judy Field
SUPPORT FOR YOU B E N E F I TS I N FORMAT I ON F ROM OUR A DVOCAC Y O FFI C ER
For your benefit Our Advocacy Officer, Jane Stein, is able to support people with their benefit entitlements. There are two main disability related benefits that people affected by MSA are likely to be entitled to, either Personal Independence Payment (PIP) or Attendance Allowance (AA), and Jane can advise about these. Here she looks at two other benefits available in the UK which may help you. Pension Credit Council Tax Reduction and Exemption (England, Scotland and Wales only)
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ouncil tax reductions and exemptions are not well known about or understood which means you could be paying more than you should. You may be eligible to a reduction in your council tax payments if you: •• Have made adaptations to your home specifically for the use of someone with a disability or your home is wheelchair accessible
•• You have a room (other than a bathroom, kitchen or toilet) needed by the disabled person •• You or another adult in your home is ‘severely mentally impaired’ •• You are on a low income •• You or another adult in your home is a carer (and they are not your partner) •• You live alone. The rules vary across England, Scotland and Wales (and between different councils in England and Wales) so do check with your local council. Schemes tend to be more generous if you are over pension age and if you live in Scotland or Wales. A very useful website: www.counciltaxhelp.net shows your local council, explains the local schemes and identifies where to get further advice. Just type in your postcode and click ‘Go’.
Pension Credit is a means tested benefit which often goes unclaimed. Receiving it can make a very significant difference to your weekly income. It can be paid to people who have reached the pension ‘qualifying age’ (which varies according to your date of birth). You can check your qualifying age by using the government calculator: www.gov.uk/state-pension-age. Pension Credit is quite a complex benefit to explain but checking your eligibility for it is very easy. Just call the Pension Service on 0800 99 1234 and have to hand your National Insurance number and details of your income, savings and which benefits you currently receive. They will then check your eligibility and calculate any benefit due. There is nothing to be lost by checking and maybe a lot to be gained. Pension Credit has two parts to it, Pension Savings Credit and Pension Guarantee Credit - Both can be paid together. Pension Savings Credit (which rewards those who tried to save for retirement) is only available to people who reached state pension age before 6th April 2016 but claims can still be made. Pension Guarantee Credit tops up income (not including Attendance Allowance, Personal Independence Payment or Disability Living Allowance amongst other things) to a minimum of £163.00 a week for a single person and £248.80 a week for a couple. It can be further topped up by additional amounts if you are in receipt of certain disability benefits, are a carer, or if you have housing costs. Different benefits exist in Eire and some changes are being made to benefits in Scotland so please contact Jane on 0333 323 4591 if you would like information on this or on any other benefits issue. msa news www.msatrust.org.uk | 11
SYMPTOMS A DV I CE O N C ATHETER S
Finding a catheter that’s right for you Bladder difficulties and discomfort are to some degree experienced by almost everyone with MSA. Our Nurse Specialist, Katie Rigg looks into one particular option which can help people affected‌
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here are a range of medications that can improve bladder function and reduce discomfort and you may already be taking some of these. Alongside medication, people with MSA often need some form of urinary catheterisation to enable their bladder to empty properly. Using any catheter reduces the stress of making it to the toilet but with all catheters it is imperative to drink plenty to keep them working well.
There are three internal catheterisation options which the urologist will advise you about: 1.
Intermittent selfcatheterisation which is a thin plastic tube passed by yourself or your partner through your urethra into the bladder (the passage your urine normally flows through when you go to the toilet). This is removed each time after the bladder is emptied.
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2. A urethral indwelling catheter passed through your urethra by a healthcare professional, which is left in your urethra and held in the bladder by a water filled balloon. It is changed every 6-12 weeks.
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The final option is supra-pubic catheterisation, which this article focusses on.
SYMPTOMS A DVICE ON C AT H ET ER S
For many people the thought of having a supra-pubic catheter is daunting, as it can feel un-natural and more invasive. However, it can be a really good solution in the following circumstances: •• If you are struggling to continue to self-catheterise •• If you have been getting lots of urine infections or blockages in your urethral catheter •• Your urethra may be hypersensitive and not be able to hold a catheter •• You are sexually active but you need a catheter •• You need an option which makes a catheter easier to take care of, especially for wheelchair users •• It’s less likely to get sat on, caught or pulled when dressing or moving about •• It’s less likely to get blocked as larger catheter size can be used through the urethra.
Insertion of the catheter A Urologist will use ultrasound and special X-rays to determine the safe placement of the catheter, which is usually inserted using local anaesthetic. Once the area is numbed the Urologist uses a guiding device to pass through the abdominal wall into the bladder and feeds the catheter in over this then removes the guide. There is a balloon at the end of the catheter in your bladder that is filled with water and holds it in place. You may be given a bag that is attached to your leg for the urine to drain into or you may simply have a valve on it that allows you to drain the urine into a toilet whenever needed.
Key care tips If there are problems with drainage through the catheter within the first 4-6 weeks after insertion then the catheter should not be changed or removed. If necessary a urethral catheter can be sited temporarily and advice sought from the urology team.
The first catheter change, at around 6-10 weeks after insertion, should be done by the urology team because it takes a little while for the skin tract to form. After this your District Nurse will be able to do changes for you at home every 6-12 weeks. Any blood in your urine after a catheter change should settle after 24-48 hours. The insertion site may be a bit sticky and weepy initially so a light dressing can be used and daily cleaning with cooled boiled water is best. If the site is still sore and weepy after ten days a light smear of Sudocrem around the site after cleaning may help. You can bath or shower as normal, though avoid soaking the site especially, in the first two weeks. Whilst in the shower, clean from the site down the catheter and gently rotate the catheter to keep it free within the bladder and help the skin tract develop. Always wash your hands thoroughly before and after handling the catheter and bag tubing and try to avoid the connecting ends touching on anything. Don’t let the catheter bag get overfull as this will put pressure on the catheter and the skin site and reduce drainage. However, leaving a very small amount of urine in the bag can
prevent the sides of the bag sticking together and forming a vacuum that prevents the catheter draining. Strapping the catheter to the abdomen reduces pull on the catheter within the bladder and protects the skin site. Also, it is best to use alternate legs to attach the leg bag to as this slightly alters the catheter position in the bladder, so keeping it free and reducing pressure on the site.
Always carry a spare catheter with you in case your catheter falls out unexpectedly. If this happens you can go to the nearest emergency department, your GP surgery or call the District Nurse to replace it as soon as possible. msa news
For more information about catheters please contact one of our MSA Nurse Specialists:
Katie Rigg North of England, Scotland and Ireland
01434 381 932 katie.rigg@msatrust.org.uk
Emma Saunders Midlands and North Wales
0330 221 1030 emma.saunders@msatrust.org.uk
Jill Lyons West of England and South Wales
01934 316 119 jill.lyons@msatrust.org.uk
Samantha Pavey East of England
0203 371 0003 samantha.pavey@msatrust.org.uk You can see an area map at: www.msatrust.org.uk/nurses.
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F U N D R A I S I N G S TA R S A R O U N D U P O F YO U R L AT EST FUND RAISING STORIES
IN YOUR COMMUNITY Rachel Bache has been kindly organising a Speed Quiz the last few years in memory of her mother Elaine Bache. The fundraising is closing in on £3,000 so far – well done!
J U LIE PAYNE ON HER ABSEIL
Delia Kelly hosted a Milk Sugar And Tea party in memory of Christopher Byrne, with her sisters, Laura and Lisa and mother, Bridget. They had an auction and raffle as well and raised a fantastic €1,800.
Our Glasgow Support Group leader Corinne Ingram (middle) organised a Masquerade Ball in support of her brother, Leslie (also pictured) who has MSA. The evening was a great success raising £400.
Emma Jennings and Kaye Jackson organised a fundraising night in memory of their father, Jim Carruthers. The event took place at Kaye’s Greenhill Hotel in Cumbria and raised more than £2,000. Below our MSA Nurse Specialist, Katie Rigg, collects the cheque.
Earlier this year, Joanne and David West hosted a barbeque and Afternoon Tea in memory of William Brooks, raising £560 for the Trust.
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Fundraising from tea parties goes towards our MSA Nurse Specialist service. To order your Tea Party pack email fundraising@msatrust.org.uk or visit www.msatrust.org.uk/raise-a-cup-for-msa for more information.
F U N D R A I S I N G S TA R S A ROUN D UP OF YOUR L AST E ST F UN D RA I SIN G STO R I ES
EVENTS THIS SUMMER The British 10k was a great success this year. Our team included our very own Deputy CEO, Andy Barrick and some of his friends.
Janice MacInnes’s nephew, Nik McKenzie ran the Edinburgh Marathon in memory of Janice’s father, Donald. It was a great day with more than £500 raised.
TREKKING TO BEAT MSA Faye Coates and 12 of her family and friends climbed Pen y Ghent, Whernside and Ingleborough in memory of Faye’s father Maurice Coates. They raised over £1,500.
Suzanne Black and a team of 20 completed the Yorkshire Three Peaks Challenge in under 12 hours. They raised more than £2,000. The challenge was for Suzanne’s mother, June, who has MSA. Well done Team June!
The MSA Trust cheering team was at the 2018 Great North Run this year, supporting our fantastic team of 15 runners!
Ride London this year was a wet day but Victoria, Heather, Amy, Charlotte, Andrew and Alastair (in action!) all finished the 46 or 100 miles for MSA Trust. Well done and sorry it was so soggy!
Kelly Parkinson, Stacey Watkins, Nicki Stafford and Kacey Jade Dent walked 84 miles of Hadrian’s Wall with their dogs. This was in support of Christine Humpleby who has MSA. The walk was followed by a car boot sale organised by the community champion at Tesco Barnsley Extra where Kelly works. In total over £2,000 was raised.
Sarah, Heath, Tom and Tony, from our corporate partners Dixons Travel, did the annual 100km endurance challenge called Race to the Stones. They crossed the length of the Ridgeway, the oldest path in the UK. Later in August Debi Freeland, branch manager at Dixon’s Liverpool airport store, abseiled down Liverpool Cathedral.
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SUPPORT FOR YOU E M M A R U S HTO N P R E S E N TS HER REGULAR ROUNDUP OF YOUR TOP SUP P ORT GROUP T IP S
Supporting & Helping Each Other As we approach the end of 2018 we’re on track to have run the most Support Groups ever in a year – approximately 140 meetings. Each one means that people affected by MSA have a place to share their experiences. That’s all down to our fantastic Support Group Leaders and Nurses who organise meetings all around the country. Here is a selection of things that have been raised at recent Groups but please do also look on the next page to find a meeting near you.
A
t the Limerick Support Group a member spoke about an organisation called Family Carers Ireland which is a national organisation that provides advice and support to carers. They can assist with benefits claims helping with completing forms, checking eligibility and will also support people through appeals if necessary. They also offer a free CareLine which offers practical help on a range of topics including respite care and available support from your local authority. The CareLine number is 1800 240 724 (Freephone) and further information is available on their website - www.familycarers.ie. Katie Rigg, MSA Nurse Specialist, also visits Northern Ireland three times a year and at the Belfast Support Group issues around housing adaptations were discussed. Some people at the Support Group advised anyone having difficulties to contact the Lisburn Housing Executive. The organisation gives recommendations and advice on adaptations and grants for the whole of Northern Ireland. More information can be found here www.nihe.gov.uk. Difficulties understanding what might be the best car adaptations for people with MSA is a common theme at Support Groups. At the most recent Etton Support Group in East Yorkshire our MSA Nurse Specialist, spoke about a move within Motability schemes to steer people towards purchasing hoist attachments on the passenger side to get people in and out of car. This is cheaper than a wheelchair adapted vehicle (WAV) adaptation however, this can be a difficult option to manage as the person is in a hoist in a confined space and getting them positioned well can be tricky. The key message here is to
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make sure you try it out at the centre before committing to anything. Whilst WAV’s are more expensive it might still be the best option as they will last a long time, the person with MSA can sit comfortably in their wheelchair for the journey and it’s easier to manage for carers. You can find out more about adaptions to vehicles here - www.motability.co.uk/cars-scooters-andpowerchairs/adaptations-overview/adaptationsavailable-on-the-scheme. At both the West Yorkshire and Cumbria Support Groups the management of saliva was discussed. If too much saliva is a problem then Atropine eye drops can be helpful when used under the tongue. These are used because a side effect of the eye drops is the drying of secretions. Most GPs will prescribe these drops for this purpose though they are not obliged to as this use is not what they were licensed for. Discuss this with your GP or Neurologist as it has positive results for a lot of people and could be an option for you. The South London Support Group held its second meeting and a very useful, practical tip from a member was to use ‘grabbers’ to help with picking up things if bending down is difficult. The family found it helpful to keep one in every room so they were accessible at all times. These can be bought online from a range of websites and cost around £7-10. msa news If you have any questions about anything included in this article please contact your MSA Nurse Specialist at support@msatrust.org.uk.
SUPPORT FOR YOU F IN D YOUR LOCA L SUP P O R T G R O U P
Support Groups are a great way to meet other people affected by MSA, listen to presentations from healthcare professionals who can support you and meet our MSA Nurse Specialists. Please contact the Trust’s office on 0333 323 4591 or email support@msatrust.org.uk for more details. These groups are subject to change, so please check the Trust’s website or ring the office for up-to-date information.
GROUP
VENUE
DATE & TIME
Dublin
St. Francis Hospice Raheny, Station Road, Raheny, Dublin 5
Tue, 16 Oct - 1pm
South Yorkshire
St Peter and St Paul Church Hall, Todwick, Sheffield S26 1HN
Wed, 17 Oct - 1.30pm
County Sligo
Therapy Room, St John's Community Hosptial, 8 Ballytivanan Road, Sligo
Wed, 17 Oct - 1.30pm
County Limerick
Nurses Residence, Western Regional Hosptial, Limerick
Thur, 18 Oct - 2.00pm
Kent
Room B028 Blake Building, Medway Campus, University of Greenwich, Central Avenue, Chatham Maritime ME4 4TB
Thur, 18 Oct - 11am
Essex
Great Tey Village Hall, Great Tey CO6 1JQ
Mon, 22 Oct - 2pm
Cornwall
Carnon Downs Village Hall, Tregye Road, Carnon Downs, Truro TR3 6GH
Tue, 23 Oct - 1:30pm
Devon
Baptist Church, High Street, Cullompton EX15 1AA
Wed, 24 Oct - 2pm
Norfolk/Suffolk
Roydon Village Hall, High Road, Roydon IP22 5RB
Wed, 24 Oct - 2pm
County Durham
Chester Le Street Hospital, Day Room, Front Street, Chester le Street DH3 3AT
Mon, 29 Oct - 1.30pm
Lincolnshire
Tesco Superstore, 186 Wragby Road, Lincoln LN2 4QQ
Mon, 29 Oct - 2pm
West Sussex
Worthing Quaker Meeting House, 34 Mill Road, Worthing BN11 5DR
Tue, 30 Oct - 2pm
East Yorkshire
Etton Village Hall, 37 Main Street, Beverley HU17 7PG
Wed, 31 Oct - 1.30pm
Cumbria
Burton Memorial Hall, Main Street, Burton in Kendal, Carnforth LA6 1NA
Thur, 1 Nov - 1.30pm
Scottish Borders
The Old Gala House, 8 Scott Crescent, Galashiels TD1 3JS
Mon, 5 Nov - 1.30pm
Glasgow
Alexandra Court Care Home, 332 Edinburgh Road, Glasgow G33 2PH
Thur, 8 Nov - 1.30pm
West Yorkshire
Small Hall, Kirkgate Centre, 39a Kirkgate, Shipley BD18 3JH
Fri, 16 Nov - 1.30pm
Dorset
The Grove Hotel, 2 Grove Road, East Cliff, Bournemouth BH1 3AU
Mon, 19 Nov - 11am
Merseyside
St John the Baptist Church Hall, Forest Road, Meols, Wirral CH47 0AF
Wed, 21 Nov - 2pm
Hertfordshire
Hospice of St Francis, Spring Garden Lane, Off Shootersway, Berkhamsted HP4 3GW
Wed, 21 Nov - 2pm
County Tyrone/ Strabane
Please contact the Trust’s office on 0333 323 4591 or support@msatrust.org.uk for more details
Mon, 26 Nov - 12pm
Belfast
Marie Curie Hospice, 1A Kensington Road, Belfast BT5 6NF
Tue, 27 Nov - 1.30pm
Greater Manchester
St. Andrews Church, Hope Centre, 27 Tattersall Avenue, Bolton BL1 5TE
Wed, 28 Nov - 1.30pm
County Down
Downe Hospital , Primary Care Confernece Room 1, 1st floor, 2 Struell Wells Road, Downpatrick BT30 6RL
Wed, 28 Nov - 1.30pm
Shropshire
The Lantern, Meadow Farm Drive, Shrewsbury SY1 4NG
Mon, 3 Dec - 1.30pm
Northumberland, Tyne & Wear
St. John's Church Community Hall, West Lane, Killingworth, Newcastle upon Tyne NE12 6BL
Mon, 3 Dec - 11am
North Yorkshire
St Columba's Church, 119 Dean Road, Scarborough YO12 7JH
Thur, 6 Dec - 1:30pm
Surrey
Shalford Village Hall, Kings Road, Guildford GU4 8JU
Thur, 6 Dec - 2pm
Lancashire
Tesco Extra branch at Clifton Retail Park, Blackpool FY4 4UJ
Fri, 7 Dec - 1.30pm
West London
St.Paul’s Centre,Queen Caroline Street, London W6 9PJ
Fri, 7 Dec - 2pm
Cardiff
City Hospice, Whitchurch Hospital Grounds, Whitchurch, Cardiff CF14 7BF
Wed, 9 Jan - 11am
South Yorkshire
St Peter and St Paul Church Hall, Todwick, Sheffield S26 1HN
Wed, 20 Feb - 1.30pm
www.msatrust.org.uk | 17
SUPPORT FOR YOU VO I C E BAN KIN G
Record and press play Samantha Pavey, MSA Nurse Specialist, looks at how voice banking can be an option for people with MSA when speech becomes difficult. What is Voice banking?
What equipment is needed?
Voice banking is a process that allows a person to record a set list of phrases with their own voice. This is then converted to create a personal synthetic voice. It can be used to create an infinite number of words and sentences. It will not be a perfect replica of your voice but it will sound similar.
Voice banking services are accessed online, so a PC or laptop is required with internet access. A suitable microphone is also important. This should be a headset model and individual companies can advise you on which works best with their software. The recording environment should be quiet with no background noise so voice banking can be done at home but you will require specialist support in order to do this. Tablets do not usually have the processing power that is needed, but they can be used with a synthetic voice as a communication aid if voice banking doesn’t work for you. Voice Banking equipment varies in price ranging from £499 to £1,685. There are some voice samples on the websites below you might like to listen to: www.cereproc.conm/en/products/cerevoiceme www.modeltalker.org www.acapela-group.com/voices/voice-replacement
How does it work? You will record a number of different phrases that are then combined to create a synthetic voice. This voice will then be used to vocalise any sentence using a speechgenerated communication device. The number of phrases varies depending on which service is used, but it can be up to 1,600 sentences. The process can take six to eight hours to record, which can be exhausting, so it is usually done in small sessions, over a number of weeks or months.
It doesn’t work for everyone Not everyone will be able to bank their voice for future use as it will depend on your speech difficulties. If your speech is slurred, it may not be suitable for you. Ideally you should consider voice banking before speech becomes problematic. Of course, the voice you put in will be the one you get out, not an improved version of your speech. If your voice is quiet, it might be possible to make it louder with an amplifier.
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How do I access it? Your Speech & Language Therapist may need to support you for voice recording to be successful, so do speak to your Speech & Language Therapist in the first instance. If you haven’t seen a Speech & Language Therapist, you should ask your GP to refer you to one locally. msa news If you require any further information please contact your MSA Nurse Specialist at support@msatrust.org.uk, who will be happy to discuss voice banking with you.
FUNDRAISING SUP P ORT IN G T H E T R U ST
TWC’s Lyke Wake Walk Challenge John Hindmarsh was a prominent figure in his local health community, spending much of his career at the Friarage Hospital, Northallerton and James Cook Hospital, Middlesbrough as a consultant Urologist. He was diagnosed with MSA in 2014 and sadly passed away in February this year.
J
ohn’s family pledged to raise awareness and funding for research into MSA. So began the fundraising journey of his daughter Rachel, and the company she co-owns, TWC Facilities Ltd, which is a hygiene services company in North Yorkshire. Rachel, her husband Martin and TWC Facilities Ltd staff decided to take on the Lyke Wake Walk in aid of MSA Trust in June. The Lyke Wake Walk is a complete crossing of the North Yorkshire Moors from Osmotherly in the west to Ravenscar in the east. The challenge involves completing
the 40 mile route in under 24 hours. The team did it in 19 hours - setting off the night before and finishing the following evening. Sponsorship money has continued to come through steadily and the Walk has raised close to an incredible £10,000 so far - Well done everyone! Rachel said “We knew nothing about MSA at the time but have witnessed its nature and the speed in which it can take hold. We did the Lyke Wake Walk so that one day, others don’t have to go through the same ordeal”. msa news
O U R N E W PA R T N E R S H I P
W
e are delighted to announce a new partnership with the Bag It Up (BIU) Group. BIU is a textile recycling organisation that provides recycling banks across the UK. Donated clothing and shoes from these banks are then resold and the Trust receives part of the proceeds. There is no cost involved for the Trust or the venue hosting the clothing bank as BIU provide all the equipment and services needed to operate the recycling scheme. BIU only sell to recognised sorting or grading partners who in turn sell in markets where trade is free and fair. They have internal audit procedures that ensures these standards are maintained. Clothing and shoe banks are placed across the UK ideally in busy public places like supermarkets or car parks. Private sites like community or garden centres, pubs, local shopping arcades or post offices are also all good locations. BIU makes every
effort to secure new venues for placing the banks but would appreciate your local knowledge. This is where you, our community supporters, come in. If you know of any such venue which might be willing to host one of the clothing banks, please email fundraising@msatrust.org.uk. We will then forward your suggestion to BIU who will contact the venue. Unfortunately, BIU have partnerships with other charities in Dorset, Somerset, Berkshire, Oxfordshire, Buckinghamshire, Bristol, Bath, South Gloucestershire, Gloucestershire and Yorkshire. Therefore, sadly we cannot place banks in these locations. So, if you can think of any other locations, please get in touch. This would be an amazing way to support the Trust, while helping people to ‘declutter’. msa news www.msatrust.org.uk | 19
Support the Trust this Christmas Give our cards this Christmas and help raise awareness of MSA.
Night before Christmas
Santa & Reindeer
Robin in the Snow
Silent Night/Holy Night (5 of each design)
Each Christmas card design comes in a pack of 10 and costs £4.00 plus postage and packing. If ordering from Ireland, please email fundraising@msatrust.org.uk for price of P&P. Please see our cost table for prices if buying multiple packs. Order online at our website, call 0333 323 4591 or return the slip below with a cheque.
Our cards have the following greetings inside: Night before Christmas and Silent Night / Holy Night “Wishing you a Merry Christmas and a Happy New Year”. Santa and Reindeer and Robin in the Snow - “Season’s Greetings and Best Wishes for the New Year”.
Pack(s)
1
2
3
4
5
6
7
8
9
10
COST incl. P&P
£5.00
£9.30
£13.30
£17.30
£22.65
£26.65
£30.65
£34.65
£38.65
£42.65
If you live outside of the UK, please contact the Fundraising team for P&P costs: fundraising@msatrust.org.uk.
Multiple System Atrophy Trust Christmas Card Order Form Name:............................................................................................................................................................ Address:......................................................................................................................................................... ..................................................................................................................................................................... Postcode:.....................................
Telephone:............................................................................................
Night before Christmas (Qty):..........
Santa & Reindeer (Qty):............
Robin in the Snow (Qty):.................
Total payment enclosed £........................................................................
Silent Night/Holy Night (Qty):...............
Due to changes in regulations, you need to let us know how you want us to keep in touch for fundraising news and events. Please fill out your contact preferences below. Telephone
Post
......................................................................
I prefer no contact
Please return slip to MSA Trust, 51 St Olav’s Court, Lower Road, London SE16 2XB with payment by 10th Dec 2018.