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MS-UK Blog

#TeamPurple virtual Heroes!

Posted on: November 27 2020

Charlotte Donna and Mim2.jpgWe were so disappointed for all of our #TeamPurple runners when it was announced that the Virgin Money London Marathon 2020 was postponed and then ultimately cancelled. However, we were blown away by the level of support from our runners, especially when the news broke that the Virgin Money London Marathon was going virtual for its 40th race.

After opening up our remaining virtual places to past runners and our runners’ friends and family, we had an amazing 100 people taking part on behalf of MS-UK!

On 04 October, they set out all around the UK and even some across the pond in Canada and the USA.

It was great to see how so many of our runners decided to make the event their own. Charlotte, Donna and Mim in Essex, decided to take on the challenge in fancy dress. They decided to run through the decades marking the start of the Virgin Money London Marathon.

They started in the 80s when the London Marathon began, before moving onto Ab Fab for loop three and were feeling magical in their Hogwarts get up as the progressed. They then ran around as various emoji’s before completing their run dressed as NHS staff to honour those who have been working around the clock over the past few months.

Alongside the creativity shown by our runners making their own finishing lines and having lined their routes with the London landmarks, some of #TeamPurple were invited to share their story on the BBC wall and on local radio stations which is truly incredible!

Of course, we cannot talk about the virtual event without sharing the experience of Jodey Hopcroft, who ended up covering a distance of 50 miles instead of the usual 26.2 miles due to a lack of signal for her tracking device. Despite the geological mishap, Jodey has stayed in good cheer and her story went viral after being interviewed by her local newspaper. Her story has since spread to various media outlets including Sky News and BBC, as well as other local and national radio stations and even made international news in India, Sweden and France to name a few. This led to a huge spike in donations to her JustGiving page – well done Jodey!

A huge thank you to all the runners and their friends and family for their continued support during this time, as a result of the virtual Virgin Money London Marathon #TeamPurple raised an additional £30,000!

 

Supporting the local community

Posted on: November 25 2020

Foodbank pic.jpgHi everyone,

Every year MS-UK looks for different ways we, as an organisation, can get involved and give back to our local community in Colchester, Essex.

Community is at the heart of everything we do as a charity. In the past, we have volunteered for other local charities, such as Wellies-On, a care farm that offers the therapeutic use of farming practices and we regularly collect donations for our local foodbank. Although this year the pandemic has prevented us from returning to these charities to lend a helping hand we have still created our usual Christmas collection for Colchester Foodbank.

Colchester Foodbank has been supporting people in the local area since 2008 and has increased the number of people it helps in the last year by 34%. It provides three days’ nutritionally balanced emergency food and support to local people who are referred to them in crisis. It is part of a nationwide network of foodbanks, supported by The Trussell Trust, working to combat poverty and hunger across the UK.

Even more people than we could have imagined have experienced hardship this year as a result of the pandemic and the need for support is greater than ever, so if you are able, please search for you local foodbank or other charities supporting people in need in your area and give something back if you are able to. Click here to search for a foodbank near you.

Best wishes, 

Sarah-Jane Elliott

Communications Manager

Reasonable adjustments and MS

Posted on: November 24 2020

Rebecca Armstrong2this one.jpgMSer and HR expert Rebecca Armstrong explains how to ask for reasonable adjustments when returning to work

One of the topics that comes up regularly in the multiple sclerosis (MS) and work community is that of reasonable adjustments. As we may soon be re-entering the world of work the topic is very much alive and well, so in this column I am focusing on how to request a reasonable adjustment in the current working climate.

I think it is important to say that one of the more positive impacts of the last few months has been the fact that, for many jobs, home working has been a necessity and, on the whole, has worked. This has challenged those employers who might have been previously reluctant to think about things differently and this undoubtedly will open up doors and opportunities for more flexible working as we move forward.

Returning to work might be needed for the economy and even at an individual level for mental health, but that doesn’t negate the fact that it can be a very stressful and scary time, especially when you have an underlying condition such as MS. Employers are required by law to complete a Covid risk assessment and within that they need to consider how to keep their vulnerable employees as safe as possible. You may feel that it doesn’t fully consider your individual needs and feelings and that is where requesting a reasonable adjustment comes in.

Reasonable adjustments are there to help make work accessible for people who have a disability. They have a very broad scope and you can ask for what will make work feel safer for you. This could include working from home, flexible start and finish times (to avoid busy times), relocation of your desk, the type of work you do including your interaction with the public and of course some adjustments that may not be linked to Covid such as being situated near a fan or having dictation software. Adjustments can be permanent changes or temporary measures during a challenging period and you can also ask for them to be put in place on a trial basis if either you or your employer are unsure about how they would work in practice.

If you want to request an adjustment here are some top tips

  • Think about what you need and why that would be helpful. Remember your employer is unlikely to understand MS fully and therefore including why something will help you can be the difference between getting it agreed or not.
  • Think about the impact on your job and how you will continue to manage this. Your employer will consider whether agreeing an adjustment means that work delivery will suffer.
  • Put your request in writing asking for what you need, for how long and what additional information that they might need.
  • Consider asking your MS team to support your request with a letter or asking for a referral to occupational health to support your application.
  • If the request is declined, ask for the reasons why so you can consider how to respond and whether to appeal.

Rebecca writes a regular column in New Pathways magazine. Fancy receiving every issue through your letterbox? Keep up with all the latest news and views in the world of MS by subscribing today!  Subscribe to New Pathways

How do you cope with MS?

Posted on: November 24 2020

hannah resized.pngResearch student Hannah Morris looks at how your coping strategy influences your quality of life when you have MS

Having a long-term condition is a lot to cope with, and as someone with multiple sclerosis (MS), this is something I’m very aware of. But often, how we go about coping and what style we use has a big influence on our overall quality of life.

What is coping?

Coping refers to an ongoing process of thoughts, emotions and behaviours relating to how a person deals with stressors. Different people use different coping methods in different situations, but ultimately the aim is to solve a problem and return to the original optimal functioning state.

The coping style we chose comes as a result of how we interpret a stressful situation to begin with. That is, we ask ourselves questions like

  • Do I have any control over the situation? If so, what can I control?
  • What has been my experience of this situation before?
  • Do I have the ability to manage the situation?
  • What resources can I draw upon to make things easier? 

These types of questions usually guide the coping strategy that we will follow through with.

What are the types of coping?

There are many different coping styles, but they can all be broadly divided into two types, problem-focused and emotion-focused.

Problem-focused coping. This type of coping aims to deal directly with the cause of the stressor in practical ways.

Examples of this include gathering information, seeking practical support, considering solutions, evaluating pros and cons and making plans.

The advantages of this approach are that it removes the stressor and deals with the root cause and, therefore, provides a long-term solution.

On the other hand, there are situations where a problem-focused approach is not possible. For example, with MS, there is little we can do to control many elements of the condition and therefore tackling the root cause is often not possible.

Emotion-focused coping. This type of coping is more reactive and seeks to manage and reduce the negative emotions felt as a result of the stressful situation rather than the problem itself. Some types of emotion-focused coping are helpful and others are not.

Examples of this type of coping include seeking emotional support, acceptance, cognitive restructuring, positive reinterpretation, psychological disengagement, distraction, or turning to drugs or alcohol.

The advantages of emotion-focused coping is that they are accessible when the source of stress is out of a person’s control.

However, emotion-focused coping has been linked to poorer psychological wellbeing in people with MS, perhaps as it doesn’t deal with the root cause of the problem or provide a long-term solution, especially in the case where the less helpful methods such as distraction and disengagement are used.

My coping methods

During my first relapse after diagnosis I relied heavily on the less helpful types of emotion-focused coping. Until this point, my MS was very much silent and I was convinced I probably just had clinically isolated syndrome. So some four years later I had noticed the bottoms of my feet going numb, but carried on with life trying to keep distracted and ignore the fact that the numbness was slowly creeping up to my thighs.

In denial, I hadn’t sought any help. I didn’t even tell my husband to begin with, but he became suspicious as this once invisible symptom was becoming more outwardly obvious. He encouraged me to call my MS nurse, so I did, but, of course, I played it all down. The consequences of this meant that when I finally accepted that I was having a relapse and I did have relapsing remitting MS, I had to go through the same experiences and it was like being diagnosed all over again. It felt like the world was caving in on me as I went through the process of acceptance all over again.

Over time, I’ve been able to use more helpful emotion-focused coping by focusing on the benefits of having MS (yes, there are some!). It strengthened my relationship with my husband and family, it’s given me a passion for the work I do, helping others like me, it’s given me a sense of empathy for people with disabilities generally, and it’s made me appreciate the good days and the blessings in my life. These are all experiences I would not have had without my diagnosis and have made it a lot easier to live with MS.

I’ve also found myself able to use more problem-focused approaches in recent times, too. Due to pregnancy, I’ve been off treatment for over a year now and I’m anxious that I am now vulnerable to relapse, as is usual post-partum for me. I know this is a reminder that I do have MS and there are times that I still struggle to accept that, but I also need to make a decision about treatment and have been comfortable enough to weigh up all my options, speak to my loved ones and my MS team about it and make an informed decision about what’s best for me.

What style are you?

How do you react to your MS? What is your first reaction when you experience a difficulty as a result of your MS?

1. Do you call a member of your MS team and seek practical support? Do you think about the possible ways you can deal with the situation? Do you consider what has and hasn’t worked before?

Or

2. Do you prefer to withdraw and stay alone? Distract yourself with other things? Find positives in the situation? Seek emotional support from friends and family?

If you answered yes to the questions in option one, then you are using problem-focused coping. If you answered yes to the questions in option two, then you are using emotion-focused coping. You might have even found yourself using a mixture of both.

Want to read New Pathways, which is packed with real-life stories, plus news and inspiration for living your best life with MS? Subscribe here

“I feel no less a hostage than I did at the beginning”

Posted on: November 19 2020

Martin.jpgFor International Men’s Day, Martin Baum reflects on what it means to be a man with MS

19 November is International Men’s Day and as an MSer that gives me pause for thought. As someone living with multiple sclerosis (MS), do my struggles make me different to any other man commemorating this day?   

After chronicling the difficulties in a series of blogs about my long and sometimes abusive relationship with MS, having to endure symptoms hardly qualifies me as unique.

Over the years my wife Lizzy, as my carer, has become my gatekeeper, my rock and protector. Yet as much as she protects, she is also a reminder of the losing battle I have for my independence and that is the trade-off.

While my struggle against MS incarceration is no Spartacus or Braveheart moment, what it represents is me desperately wanting to defend my body against the MS bailiffs. Those dispossessors of independence have already been and taken my freedom away to drive on my own without Nurse Ratched – sorry, Lizzy – riding shotgun.   

I am not in a wheelchair, and don’t plan to be any time soon. But as my legs continue to be less than supportive, the more my knees continue to buckle under the weight of my torso. This is a reminder that the wheels of my growing immobility are now in motion.

Mentally, I still see myself as a ‘player’ but physically, “it just ain’t going to happen”, as my dad used to say. While I am only 60, the days of leaping in and out of a car à la Starsky and Hutch (for those that remember them) are long gone, having given way instead to snaking myself in and out of the passenger seat. It was much the same with walking aids.

It took so long to mentally ‘get over it’, to feel at one with my cabbage stalk stick. Although there’s nothing unique in using one, and no matter how much I resented being bonded to it from the very start of our affiliation to each other, in truth, all this time on, I feel no less a hostage than I did at the beginning.

Yet despite all the trials and tribulations of having MS, of living and dealing with the many symptoms of it, one thing is for sure – it does not actually make me unique. What it does is make me think of is every man who cannot be here on the 19 November to celebrate International Men’s Day. 

Despite the daily struggles of having MS, the fact I am still here to write the blog, to tell the tale of just how restrictive life is, which this year, because of Covid-19, has been the same for all of us, there is only one word that comes to mind and that is ‘blessed’. Because I am thankful to still be here today when so many are not.

#LiveLifeNotMS

We have another new Choices booklet!

Posted on: November 19 2020

Spasms and spasticity front cover.JPGWe have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).

Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.

This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more. 

We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.

You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.

To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.

We are here to help you to live a happier and healthier life.

 

Laura and Ryan

MS-UK Helpline

Living with multiple sclerosis can sometimes leave you feeling lonely... This is Helen's story

Posted on: November 17 2020

Helen.jpgWhen I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.

Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.

Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.

Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.

I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.

Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.

 


Help stop loneliness this Christmas

This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas. 

Make a donation

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Can you help inform MS research?

Posted on: November 17 2020

SurveyEngine is conducting a survey of multiple sclerosis (MS) patients in the UK on behalf of Erasmus School of Health Policy & Management in Rotterdam. The goal of this academic research project is to systematically determine patient preferences for treatment characteristics amongst MS patients in five European countries (the Netherlands, France, Germany, UK, Italy). The survey will ask you questions about your thoughts and opinions about MS treatment options.

After completion of the survey, you'll notice there is a page asking for your name/email address. Providing this information is optional. As a thank you for your participation, we will send a £5 Amazon.co.uk voucher to those who complete the survey and leave their email address. Your name and email address are only used to send the voucher and will not be linked in any way to your responses in the survey. All data is kept strictly confidential and only used for the purpose of this academic research. If you have any questions, please do not hesitate to contact: elizabeth@surveyengine.com.

Take the survey

What does safeguarding mean?

Posted on: November 16 2020

Diana.jpgDiana Crowe, Head of Services at MS-UK, explains all for Safeguarding Adults Week 2020

We all have a right to a life that is free from abuse and safeguarding is everyone’s business. This week it is national safeguarding adults week and as Head of Services I thought I would take some time to talk about this as it is part of my role.

The world has changed significantly for all us since March 2020 and the first national lockdown due to Covid-19 and it has impacted on all of us in different ways. Many of our clients have been struggling with the loneliness and isolation caused by shielding and living with the worry of catching the virus. For others it may have impacted on finances, relationships and family life which can create tension and difficulties that increase risk of harm.

MS-UK has a national helpline and a national counselling service which are both delivered by telephone, video call or email. Therefore, it is my role to ensure that all of my staff know how to recognise the signs of abuse or neglect and understand what actions they need to take in order to prevent harm.

So on a day-to-day basis, if one of my members of staff had concerns about someone they had been working with they would let that individual know that were going to speak with me or another senior manager to see if any action needs to be taken in order to keep them or someone else safe. It is always best practice to give the individual a chance to express their wishes and what they would like to happen but in some circumstances we have to take action in order to prevent any immediate risk of harm.

Dealing with safeguarding matters can be challenging for all involved so we make sure that we support everyone throughout the process. Our safeguarding adult policy is on our website so anyone that accesses our services understand the responsibilities we have and to provide confidence and assurances to those we work with. We always have the best interests of the individual at the heart of what we do and will always keep them informed of our actions where possible. The clients’ local Adult Social Services guide all of our decisions and actions.

Our vision at MS-UK is a world where people affected by multiple sclerosis (MS) live happier and healthier lives. Our values include providing professional high quality services by knowledgeable staff, ensuring that the people we support are treated fairly, with respect, care and compassion. Adult safeguarding is at the heart of all we do to ensure that we can make a difference to those affected by MS.

Stop loneliness this Christmas

Posted on: November 13 2020

Did you know that 71% of people living with multiple sclerosis (MS) feel lonely or isolated because of their condition? By working together with MS-UK, you can help these people feel less alone this Christmas.

MS affects around 130,000 people in the UK and 2.3 million people worldwide. Living with a long-term condition that people do not understand can make it hard to stay connected. It can be difficult to maintain independence and often people struggle to reach out and ask for the support they need as a result. This is why services like the MS-UK Helpline are so essential. But it wouldn’t exist without people like you.

MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone and we continue to provide the MS community with essential information and emotional support when they need it most. As the Christmas period approaches, demand will be even higher and we need your support to ensure we can be here for as many people affected by MS as possible.

Our research has revealed that people with MS are often too scared to speak out about loneliness for fear of being viewed as a burden. People tell us they feel like a “viewer of the world, not a part of it,” and have “no one to share, communicate and laugh with, turn to, speak to and share worries with.” But with your continued help, MS-UK can be there for anyone who calls our Helpline to listen and provide them with much-needed emotional support.

This Christmas, by donating to the MS-UK Helpline you’ll help ensure no one has to face MS alone.

Donate to help stop loneliness

 

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“I realised I am not like other mums”

Posted on: November 10 2020

carla.jpgMSer and career coach Carla King on the ups and downs of parenting with MS

I’ve wanted to be a mother for as long as I can remember. In my role, I am simultaneously elated and exhausted but the reward far, far exceeds anything that might feel testing. TV and film often send up parenthood with comic effect. We laugh along because it’s funny, but the truth is that mixing multiple sclerosis (MS) with parenting can be more guilt-tripping, than comedic.

Idealised parenting

For years, I would push myself to get through the school run, particularly as this was toward the end of the day by which time my energy reserves were depleting. This meant I could just about muster collecting my son and the bus ride home, but not to go into lengthy discussion with other parents. Why push myself? Because I thought motherhood was all about sacrifice and how I was supposed to behave, even with MS.

Adapting to parenting with MS

Even before lockdown, I had scaled back playdates due to energy levels required to ‘entertain.’ By this I mean just coping with the noise, keeping one eye on preparing for a feeding frenzy and the other on anyone intent on killing each other. Yet children have an extraordinary way of turning anything into play, so now there are many more Zoom, WhatsApp and phone calls.

I am heat-sensitive, which makes me unwell. In the height of the summer, I avoid the park after school. If we don’t end up in our garden, you’ll find us making ice cream smoothies.

Routine isn’t just for children, some of us with cog fog need it too. If I have some semblance of routine, I can remember tasks more easily, for example, putting out school uniform on a Sunday night, or PE kit ready for Tuesday.

Halloween at Carlas.jpgReframing

In mid-October, I experienced a level of fatigue that knocked me for six. I don’t know why. A couple of weeks later, having decided to forgo trick or treating, I hatched an alternative plan for Halloween. I baked for days and put on a surprise ‘party.’ I really thought this would come at a price, but it didn’t. Literally, zero fatigue. Sometimes, we can track trigger points but, as in the former example, MS sometimes can be a conundrum to get through and not question.

The important take-away? My son had his Halloween (and some fatigue you can’t predict).

Learnings so far

I remember doing everything I could to make sure that my child didn’t feel I was different to other mums. This came at a cost and a realisation – I am not like other mums. A couple of years ago, I decided to stop comparing myself to anyone else. The only person I need to worry about is the only person in the world who calls me ‘Mummy.’ In all honesty, we would both rather I be authentic.

Avoiding MS parenting guilt

  1. Focus on what you can do, not what you can’t.
  2. Talk to your child. Be age-appropriate, but be open. They really appreciate it and they understand more we think. No young person needs to be worrying about us unnecessarily.
  3. As tempting as it may be, stop comparing yourself to others.
  4. Focus on what you are giving your child. Think about the empathy, values and resilience we are developing in our children.

Ok, so my bakes aren’t always perfectly decorated, I’ll not run marathons or paraglide, and I’ll always have to work harder than a parent without a chronic condition. But I’ll always try my best and I’ll always be me. My child doesn’t need me to be everything all of the time. When the chips are down, Mummy is enough.

 

Carla works as a Career Coach and was diagnosed with MS in 2008. Carla often supports MSers through diagnosis and beyond. She also presents to audiences from the MS community and the MS field. Carla is the author of a blog about living, working and parenting with MS, called My MS Bully and Me.

New shielding advice Thursday 05 November

Posted on: November 05 2020

The Government has published new advice for the clinically extremely vulnerable for keeping safe in the new lockdown which came into play at 12am today.

If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.

If you are clinically extremely vulnerable, you are strongly advised to stay at home at all times except for exercising and doctors’ appointments. You are strongly advised not to go to any shops or to pharmacies.

You are encouraged to ask a friend, family member, carer or a volunteer (for example, one of the NHS Volunteer Responders) to collect your medicines for you. If none of these are available, contact your pharmacy to inform them you are clinically extremely vulnerable and need your medicines delivered. They will arrange this free of charge.

If you have symptoms of COVID-19, you should arrange to have a test. You may wish to request a home test to be sent to you or consider attending a test site at a quieter time.

You should continue to seek support from the NHS and other health providers for your existing health conditions and any new health concerns.

You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more, visit NHS Health at Home or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.

Any carers or visitors who support you, or a child or young person in your care, with everyday needs, can continue to visit. They should follow social distancing guidance where close or personal contact is not required.

You should also continue to access support from local charities, organisations and NHS Volunteer Responders. As well as helping with shopping and medicines delivery, NHS Volunteer Responders can help with a regular, friendly phone call and transport to and from medical appointments.

Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders.

Try to keep all contact with others to a minimum and avoid busy areas. Whenever you go out, continue to maintain strict social distancing, wash your hands regularly and avoid touching your face.

You should also try to stay two metres away from other people within your household, especially if they display symptoms of the virus or have been advised to self-isolate.

You can exercise with those you live with or in your support bubble. If you cannot work from home, you should not attend work. You may be eligible for statutory sick pay, employment and support allowance, universal credit or the coronavirus job retention scheme during this period of national measures.

The formal shielding notification you receive may act as evidence for your employer or the Department for Work and Pensions (DWP) that you are advised to follow shielding guidance and should not work outside of your home for the period stated in the letter.

If you were on payroll before 30 October 2020, you may also be eligible for the Coronavirus Job Retention Scheme (on furlough), which is being extended until 2 December. Speak to your employer if you think you are eligible.

Other people you live with who are not clinically extremely vulnerable themselves can still attend work if they cannot work from home, in line with the wider rules set out in the new national restrictions from 5 November.

People who are defined as clinically extremely vulnerable are at very high risk of severe illness from COVID-19. There are two ways you may be identified as clinically extremely vulnerable:

You have one or more of the conditions listed below, or

Your hospital clinician or GP has added you to the Shielded patients list because, based on their clinical judgement, they deem you to be at higher risk of serious illness if you catch the virus.

If you do not fall into either of these categories and have not been informed that you are on the Shielded patients list, follow the new national restrictions from 5 November.

If you think there are good clinical reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP or hospital clinician.

Adults with the following conditions are automatically deemed clinically extremely vulnerable

  • solid organ transplant recipients
  • those with specific cancers
  • people with cancer who are undergoing active chemotherapy
  • people with lung cancer who are undergoing radical radiotherapy
  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • people having immunotherapy or other continuing antibody treatments for cancer
  • people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
  • those with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
  • those with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
  • those on immunosuppression therapies sufficient to significantly increase risk of infection
  • adults with Down’s syndrome
  • adults on dialysis or with chronic kidney disease (stage 5)
  • women who are pregnant with significant heart disease, congenital or acquired
  • other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions

“I don’t have to make a mess of the music in church anymore”

Posted on: November 04 2020

nina picx22.jpgNina Pearce discusses her journey since diagnosis

I know that my multiple sclerosis (MS) probably began when I was 30 and had just had my second child. I had optic neuritis, where there was a big blank splodge in the vision of one of my eyes. It got better with no treatment and no mention of MS. I thought I had had a stroke as the left side of my face was numb.

I wasn’t very sympathetically told I had MS, nor of any treatments. That was left to the fortunately much more understanding MS nurses who told me what type of MS I had and the treatment for pain and spasms I get.

Progression

I was OK for about three or four years, then my condition began to develop and my balance got much worse. My dominant left hand developed a tremor, so it was a relief that I retired from teaching in 2014 as I couldn’t write any more – marking books was out of the question.

I used to play the piano, organ, violin, trombone and guitar, but even playing the organ in church can no longer happen. Fortunately my husband retired as a vicar so we moved permanently to the bungalow we bought when I was still teaching. We are in a new area and I don’t have to make a mess of the music in church any more.

Welcome support

I have found MS-UK invaluable for support and help. In spite of COVID, the online gym sessions and the classes such as seated yoga are immensely enjoyable and I would suggest that anyone should take part. If you look on their YouTube channel here you may find more activities to join in with.

My mum has had relapsing remitting MS for about 60 years and counting. She refuses to use a rollator and begrudgingly uses one stick. I grew up having to do more in the home than many of my friends, something I tried to tell my children about as they were growing up!

I need my rollator in the home and to get to the car, or my new mobility scooter and not forgetting my tricycle. We have completed 1,200 miles so far this year. I cannot balance on an ordinary bike anymore. My husband helps push me up the more steep hills, and we try to do four and a half miles a day.

We look after our youngest granddaughter one day a week and I’m very glad that the government has said grandparents can do childcare. This has meant that we can also be on hand to pick up any of our other grandchildren from school, which we enjoy a great deal.

 

 

What is a trustee?

Posted on: November 04 2020

logo-trustees_week_landscape_cmyk.jpgThere are approximately 196,000 charities in the UK and just over 1 million trustees. Trustees are the people in charge of a charity. They help to make the UK the sixth most giving country in the world.

They play a vital role, volunteering their time and working together to make important decisions about their charity’s work.

This week is Trustees’ Week (2-6 November), an annual event which showcases the great work trustees do and highlight opportunities for people from all walks of life to get involved and make a difference.

At MS-UK our dedicated Board of Trustees works closely with the MS-UK management team to develop and ensure the effective implementation of our Strategic Plan. All of our trustees come from different backgrounds and bring with them their career and life experience to help grow and progress the charity. You can find out more about our trustees here.

 

How do I become a trustee?

If you’ve ever thought about becoming a trustee there are many charities across the UK with vacancies, take a look www.trusteesweek.org/find/.

Why I take medical cannabis

Posted on: November 03 2020

IMG_5956-28.jpgAustralia resident Jason Jordan was finding life with primary progressive multiple sclerosis very difficult until his neurologist suggested he try medical cannabis

Looking back, I can tell now that I probably had primary progressive multiple sclerosis (PPMS) from at least the age of 21. It wasn't diagnosed until I was 40 but, in retrospect, many of the strange ‘illnesses’ I had experienced weren't ‘viruses’ or ‘ear infections’ as my doctor would always claim. I’d experienced things like a lack of balance, clumsiness, flat footedness and short-term memory issues.

One day, half of my face went numb and droopy. But it wasn't until the double-vision kicked in that I really got concerned. I had been working in IT for years. At that point, I was a very early adopter of having two large screens. One afternoon, my eyes would not lock back into stereo vision. Instead I had two separate vision streams. It took a good 20 minutes for it to become normal again.

So I jumped on Dr Google and worked out it was most likely MS. My GP wasn't so sure. But the neurologist identified a problem as soon as I walked in, managed to get me straight into an MRI, and was able to get me started on treatment within 48 hours. 

Fast progression

Whilst I had read up on what MS is and what it was likely to do to me, like a lot of men, I felt bullet-proof. I'd been having all sorts of minor symptoms but I still believed disability would never happen to me. But it did, of course. Incredibly slowly at first, but it accelerated. So early on, I totally under-estimated where MS would take me. And for a long time I didn't deal very well with the symptoms. My mental self-image is of a passionate, capable, ambitious high-achiever – so you can imagine what the progression did to my mood and my demeanour. 

By the age of 40, my wife and I had built quite a large technology company, but the progression of my MS was making it exceptionally difficult for me to live up to my responsibilities and deliver on the promises I had made. Confusion, cognitive problems, logic issues, memory gaps and fatigue meant I either had to stop being the Managing Director or the business was going to fall apart. So we were forced to sell. In retrospect, it was for the best as the technology support market has since died, but at the time it was soul-destroying as up until that point in time, I had defined myself by what I do.

By 2016, I had been on virtually every medication available for MS. The best any of them were able to offer was to slow down the progression of the disease, but until Ocrevus, I'm not sure any of them did. Certainly none of them treated the symptoms. For that, I was given opioids, antidepressants and other toxic, synthetic drugs that made me feel terrible.

Out of hope

In early 2017, my neurologist told me that we were out of options. He forewarned me that I was likely to be using a wheelchair in a matter of months. Then he said to me that we could try a new legal option – medical cannabis. I had been brought up my entire life to reject cannabis as a gateway drug with no medicinal value, but I had no other choice.

By the time I started on medical cannabis, I was using a walking stick, beginning to be incontinent, and having difficulty finding my words and then pronouncing them. I had terrible pain in my toes, fingers and cheekbones and the numbness and burning had grown from my feet to my sternum. I was often quite confused, and I was angry, frustrated and depressed.

I was so very fortunate to have a neurologist who cared enough to investigate all available options. A progressive, educated professor who knew that once the conventional options had been exhausted, the fight still needed to continue. He gave me an option. He told me to research it and then supported me in the convoluted process of getting a prescription. He was not scared of peer group pressure. He put the patient first and for that I am eternally grateful.

Big improvement

Since having medical cannabis, I am 80 per cent back to normal. I will never again be 100 per cent as my brain is physically damaged. There are many, many large lesions in both my brain and spinal cord, and medical cannabis does not have any repair effect on those. But it does have a massive effect of the majority of my symptoms. I have weaned off five of my seven daily medications. I no longer take Oxycontin, Baclofen, Sertraline or Pregabalin and I avoid taking Seroquel unless I have to. I still need Pramipexole, a Parkinson's-type of medication that stops the shakes I get of an evening, but I feel so much better as a result of not having to take so many medications. My anxiety is massively reduced from not knowing what effect the potential interactions of so many drugs have.

I take a relatively large quantity of legal medical cannabis oil every day, prescribed by my doctor. The benefits have, for me, been amazing. I no longer use my walking stick. I have balance and leg strength. I no longer have any pain whatsoever. My cramps and spasms are about 10 per cent of what they were. My memory is at least 80 per cent improved. Whilst I still have the occasional urgent need to get to a bathroom, it's no longer a ‘problem’. I am back to being the person I imagine that I am. I feel alive.

This is not a miracle drug or a panacea, but seeing as though it's legal here in Australia and has so few side-effects for me it's worth trying. It's been so good for me, I felt I had a responsibility to let other people know about it. I now apply most of my free time to being a patient advocate. I tell medical professionals like doctors, nurses, pharmacists and scientists about my experience, and I also talk to other patients and their carers about trying it. If it helps just one more person, I'm doing good work.

 

Is it legal?

In the UK, a drug called Sativex is licenced to treat muscle spasms and stiffness in MS, which is taken by mouth as a spray. The main issue with Sativex is accessibility as it can prove tricky to get as many doctors aren't keen to prescribe it. It is available via private prescription from a doctor. This can work out expensive, around £500 a month. Speak to your GP or neurologist about the possibility of trying this treatment.