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Medical retirement - what you need to know

Posted on: December 18 2020

Rebecca Armstrong2this one.jpgMSer and HR expert Rebecca Armstrong explains the ins and outs of medical retirement

A regular point of discussion on the MS & Work Facebook group is around medical retirement. Many people with multiple sclerosis (MS) reach a point where if feels impossible to carry on at work due to their condition and this can lead to a crossroads.

If you find yourself at the point where you feel you can no longer continue at work, retirement might be the next step. The first and most important question to ask yourself is whether it is your current job that has become too much (even with adjustments) or if any kind of work is too much. This is important as medical retirement is a big step and one which symbolises that you will not work again (although some pensions may allow a restricted number of hours). If you feel that it is your current job that is too much you might want to consider looking for another job which is better suited before making the step into retirement.

If, however, even with adjustments, you are unable to work, then retirement is a way to access your pension early.

If you feel this is the next step for you, there are a number of things to look at

  1. Start by speaking to your pension company. They will be able to give you a clear indication of what you will get financially as well as what their criteria is for medical retirement. Many have tiered systems from full retirement where you do not work, to retirement where some work is allowed.
  2. Once you know what your pension will pay, it’s worth doing some research into what additional benefits you might be entitled to over and above that. This might be in the form of Employment and Support Allowance or Personal Independence Payment. These two things will give you a picture of what medical retirement will mean financially to help you plan.
  3. Any form of medical retirement will require the support of your consultant and/or MS nurse, so it is a good idea to discuss it with them. They are typically looking at how you are now and your prognosis for the future. For this reason medical retirement is often associated with the progressive forms of MS however, there are cases where someone with active relapsing remitting MS can also apply for retirement successfully.

Once you have completed these steps and have a clear picture of how the retirement would work for you, the next step is to discuss it with your employer. Once you raise it, you are letting them know you are unlikely to be able to continue work, which is why I always recommend this as the last stage in the process when you are sure. Medical retirement is ultimately a dismissal but it is managed as more of a mutual agreement. It is a big step and alongside this process it is worth considering counselling and other support from the MS-UK helpline.

This was origionally published in New Pathways magazine.  Subscribe to New Pathways

 

‘He doesn’t complain, he doesn’t moan and he doesn't give up’

Posted on: December 15 2020

Simon Gardner 2.jpg
Left to right - Simon Gardner, Nigel Gardner, Ed Gardner and Phil Gardner

In October this year, I decided to run a virtual marathon, my first one. I began training, building up and getting the miles in my legs, tentatively at first to avoid injury but building up the distances as I went. It was very hard but didn’t take long and like my dad, I (quietly) don’t give up.

My motivation… my dad. An athlete, a footballer, champion snooker and darts player, canoeist and lifelong fisherman. He received his multiple sclerosis (MS) diagnosis when he was 27 years old, not long after I was born. He is now 66 and although the progression of the disease has been relatively gradual, it has taken away all those things. He has lost the vast majority of the mobility control in his legs amongst other things. Having lived with MS for 40 years I cannot believe how resilient and calm he is and yet open. We all keep a little back from our loved ones and I do not doubt that he does because this is his and he owns it. He shares what he wants and faces into what he doesn’t. He doesn’t complain, he doesn’t moan and he doesn't give up.

I originally intended to run the Official 2020 Virtual TCS New York City Marathon solo and self-supported, however, an ambitious practice run turned into the full distance a week ahead of schedule! I was out on the trails and things were working out well so decided to push on to make sure I understood what the ‘real thing’ would be like… good job too as I learnt a lot about what my body needs when under this much pressure. I thought of my dad.

On the day, after designing my route and packing my vest with food and water, I decided to set off from my dad’s home and take a nostalgic run through the old days along roads, towns and villages I remember when growing up. The weather was shocking with heavy rain and being soft underfoot - so Garmin ‘Set', crime audiobook ‘On’ (Dad loves detective stories), head down, swing the arms and see where the legs take you!

20 miles in and to be honest I’d had enough of natural beauty, enough of my audiobook, my body was rejecting food and all the water in the world was not hydrating me. There was no reason I could be, but I was bored! So I called my wife and spoke to my kids who buoyed me up. Then called my dad who picked up just as the wind and rain returned and couldn’t hear a damn word I was saying! They say the last six miles are the worst. That said, I completed it, solo and self-supported while playing detective in the pouring rain.

My reward (medal) is still in the mail from US however the New York Road Runners app provided this augmented reality one which really lifts the spirits when you award it yourself while you pose for as good a selfie as you can get (or care about getting!). My other reward was a cold, then hot bath, a can of American Cream Soda, nine sausages with huge amounts of Dad's mash.

I was reading about MS-UK and what caught my eye, in particular, was their focus on the mental health of individuals with a multiple sclerosis diagnosis. My dad, my brothers and I are all fortunate to have one another to provide all kinds of support, particularly through lockdown, but we all know there will be some serious and important decisions to make in the next few years. We will need to strike a balance between support and independence. There will also be times when we do not know what to do, or if it is the ‘right’ thing and we will need the support of MS-UK.

As for fundraising, I told my story to those at work, those I run with or who I know run. With so many charities, particularly in 2020, needing more support than ever I didn’t want to appear to pressure them but when explaining the reason for my choice and the impact the support of MS-UK will one day have, people gave what they could.

Simon has raised an incredible £737.53 for MS-UK, here is the link to his fundraising page https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=SimonGardner11&pageUrl=1

If you would like to take on your own challenge to raise money for MS-UK like Simon did, please contact Lucy today on 01206 226500 or lucy@ms-uk.org

Monkey Sox have raised £11,530!

Posted on: December 15 2020

James and Lianne from Monkey Sox say thanks, and don’t forget to get your Christmas socks!

Hi everyone, and a very Merry Purple Christmas to all.

monkey2.jpgIt’s been a tough year for so many and so we wanted to share some thanks and happy news with a little update from Monkey Sox.

During the pandemic, we have been so grateful for the support of so many regular and new customers. We have remained open, selling socks online and, despite all the cancelled markets and events, we were proud to donate our target amount to multiple sclerosis (MS) charities for our second year of business.

This takes the total donation to MS charities from sales of Monkey Sox to £11,530! For those of you not aware, we donate 50% of profits equally to three MS charities, of which the fantastic MS-UK are one. 

Included in this was the sale of 64 pairs of our special #TeamPurple socks for MS-UK sports events, a design we are very proud of that matches the MS-UK kit. 

monkey3.jpgOf these, we donate £5 from every pair exclusively to MS-UK, and we absolutely love seeing your photos of the socks in action. It’s testimony to the incredible community of fundraisers at MS-UK as you have all taken part in so many personal and virtual challenges this year. Amazing efforts! We can’t wait for the group events to begin again in 2021.

We know the team at MS-UK have been working tirelessly during lockdown too, and the new services they are offering for both counselling and exercise across the country is really a big achievement. We are proud to be in touch with, and supporting, a team dedicated to making a difference to the lives of people living with MS. 

monkey4.jpgEveryone knows that socks are great gifts at Christmas, so if you would like to support them, we have many designs in both leisure and sports socks, and not forgetting little monkeys with our kids’ range!  Please go to www.monkeysox.org, and as a thank you we are giving all MS-UK readers free postage on any order with code MSUKFREE until 31.12.20. 

Please keep in touch. We hope to meet many more of you in 2021, and we wish you all the very best as we enter the New Year. 

Speak to you soon!

James and Lianne  

I struggled to find anyone who I could really relate to

Posted on: December 14 2020

Amy Thompson explains why she created MS Together, and how you can get involved

Amy Thompson.jpgMS Together is a support group for young people aged 18-35 who have been diagnosed with multiple sclerosis (MS) and live in the UK/Ireland.  

The group was founded last year by me, Amy Thompson, after I was diagnosed with MS at the age of 21. I struggled to find anyone who I could really relate to and I couldn’t find any support groups that existed just for young people. Over the last year, the group has grown from just six members to over 330 and I have huge, exciting plans for the future of MS Together. 

We offer a private Facebook group for members to connect, an optional WhatsApp group chat for more frequent support, virtual meet ups (three to four per month), and in-person meet ups (when possible). So far, we have had three in-person meet ups and we have hosted a number of virtual events including a bottomless brunch, motivational and research talks, a murder mystery, a mind-set evening, bingo and quiz nights.  

Christmas party

On 20 December 2020, MS Together are throwing a virtual Christmas Party for all members to enjoy. As part of this, we have organised a Christmas Raffle and we’ve been donated some incredible prizes, including several vouchers, personalised gifts, chocolates and snacks, wellbeing sessions, crates of beer, hampers and bundles, perfume, jewellery, art, home decor, and a top mystery prize! 

All profits raised from the raffle will be donated to MS-UK who have helped many of our members this year through their counselling service. We are very grateful for the work they do, and we are delighted to be fundraising for them. We have already raised over £500 and we still have almost three weeks to go. 

Raising money for charities like MS-UK is so important, especially during these challenging times. There are so many ways you can fundraise nowadays, and the team at MS-UK will support you all the way. 

If anyone would like to find out more about MS Together or our Christmas Raffle you can email mstogether@outlook.com. You can also follow us on Instagram @mstogetherofficial or request to join our private Facebook group here www.facebook.com/groups/mstogetherofficial.

We basically offer a safe and supportive space for all members whilst also making it fun, positive, and uplifting. We would love to be able to share more information about the group and we will welcome any new members with open arms!

If you would like to speak to the team at MS-UK about your own fundraising idea, then please contact Lucy on 01206 226500 or email Lucy@ms-uk.org

"Conversations became sadder. My outlook became more pessimistic"

Posted on: December 09 2020

Martin profile 4.jpgIn almost 40 years of living the multiple sclerosis (MS) dream, I would be lying if I said that loneliness did not come included as part of the package as if, say, it was some kind of cruel BOGOF deal. But as glib as that sounds, the stats for MSers living with the subsequent consequences of depression are truly alarming.

As many as 50% of MSers are affected by it and 25 percent of those display at least one symptom of post-traumatic stress disorder (PTSD). Although I never admitted at the time to suffering with any kind of mental health issue, on reflection, there is no denying I was just as lonely as I was emotionally isolated.

The loneliness of living with MS represented the worst of times which, in truth, were of my own doing. I was a twenty something when I was first diagnosed and almost immediately began losing my sense of self. It was difficult to cope as I began unconsciously nesting for a life of unhappy solitude which was not a happy place.

I believed nobody understood what even I could not understand which made for a very unhappy mental struggle. Opportunities to enjoy life were not fulfilled. Invitations to mix with friends became fewer. Conversations became sadder. My outlook became more pessimistic. Before diagnosis this was not who I was, but afterwards it was who I became.

I have never referred to myself as a survivor but, and as clichéd as it sounds, it took the love and belief in somebody else to make me aware. To help me recognise and lose my MS baggage that was keeping me in a prolonged state of isolation and loneliness. To stop me obsessing about what I could not control by enjoying instead what I could.

As an MSer, the past represents long periods of self-isolation. Of many years hiding myself away and leaving it to my wife to cover for my absences with lame excuses. If only I had been emotionally stronger – but that was to come later. Just how much I have moved on, however, has been demonstrated by the way I have been able to live with MS in these lockdown times.

Although there have been moments during Coronavirus where it has felt as though I had hit the wall, it is the memory of having already lived a different kind of loneliness that makes me realise that nothing will ever be as lonely again.

This Christmas, help us stop loneliness by donating to our appeal

Donate to our Christmas appeal

MS in the time of Covid

Posted on: December 08 2020

iStock-1168227653.jpgFrankie Washington and Dawn Langdon from the Royal Holloway, University of London discuss how the pandemic has led to people leading less healthy lifestyles

The Covid-19 pandemic has caused enormous disruption to our daily lives and there have been particular challenges for people with multiple sclerosis (MS). Staying safe and well is the most important thing and following all government Covid advice must be a priority for all of us. Keeping a focus on health and wellbeing is also important, and you can do this in several ways.

1. Managing your MS

With all the stress and restrictions of the pandemic, even keeping normal life going can be hard. But continuing to manage your MS well is still important. Although it might need more energy and persistence to get appointments and medication, it is very important that you manage your MS optimally, even in these difficult circumstances. Why not enlist a friend or relative to help with the phone calls or transport? Most people want to help, they just don’t always know how or when.

2. Physical activity

Survey data indicates that about half of people with MS have stopped or reduced their physical activity during the pandemic. Physical activity is important to maintain health and wellbeing. It is a good idea to put together a weekly plan for your physical activity, while following government Covid guidelines. Resources about physical activity for people with MS, including accessible exercises, can be found on our YouTube channel which you can go to by clicking HERE, and we also run exercise classes on Facebook Live twice a week which you can join in with from home. Click HERE to go to our Facebook page, give it a ‘like’, and you’ll get all the information you need. Click on the ‘videos’ tab to access all previous sessions, too.

3. Diet

It can be hard getting shopping and cooking organised in the Covid era, but diet also has a role in optimising your health and wellbeing. Unsurprisingly, in one survey a third of people reported gaining weight during the pandemic and this is also true of people with MS. In fact, there is evidence that people with MS eat much the same things as the rest of the population. But eating healthily is probably more important for people with MS.

A small uncontrolled study reported that people with MS who followed a low glycemic load diet, with support, experienced improvements in sleep, mood, anxiety, emotional health, and pain. Advice about healthy eating and managing your weight can be found in our Diet and Supplements Choices booklet HERE but in fact good general nutrition advice is the same for people with MS as the rest of the population. The NHS has some helpful advice on weight loss at https://www.nhs.uk/live-well/healthy-weight/start-the-nhs-weight-loss-plan/.

You might want to set up an online group, or you may already be in one, where you can meet up to prepare and eat healthy food, encouraging and supporting each other. Healthy doesn’t have to mean boring!

4. Mood

The COVID pandemic has affected the mental health and wellbeing of the general population, unsurprisingly given the restriction of activity and isolation that it has brought. It appears that this impact is more pronounced for people with MS. One study reported that compared with the general population, people with MS experienced more depressive symptoms, a worse sleep quality and perceived an increase in fatigue level, one of the most disabling symptoms of MS as you will know.

Sometimes a few simple steps can help to improve mood, and the NHS has got some good advice here https://www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing. There are ways of coping with stress that seem to work best. These are active strategies, such as

  1. Support. Talking about a stressful event with a supportive person can be an effective way to manage stress. Seeking external support instead of self-isolating and internalising the effects of stress can greatly reduce the negative effects of a difficult situation.
  2. Relaxation. Any number of relaxing activities can help people cope with stress. Relaxing activities may include practicing meditation, sitting in nature, or listening to soft music.
  3. Problem-solving. Identify a problem that is causing you stress, and develop potential solutions for effectively managing it.
  4. Humor. Making light of a stressful situation may help people maintain perspective and prevent the situation from becoming overwhelming.
  5. Physical activity. Exercise can relieve stress. Many other types of physical activity can help people cope with stress. See above for ideas.

Why not devise a menu a coping menu of your own, to use when things get difficult. For example, talking things through with friends or relatives, taking a walk, doing an online yoga class, or tidying a cupboard.

If you feel that professional help is required, then contact your GP or MS Nurse. Many psychological therapy services are now working online, so you wouldn’t have to visit a hospital or clinic to get help.

Hopefully, you are not feeling too overwhelmed by Covid and this article has given you a few ideas to support your wellbeing. We are currently conducting a survey about living with MS in the Covid era. If you wanted to help us, you can participate via https://rhulpsychology.eu.qualtrics.com/jfe/form/SV_3FahObokk4tdwTX. It takes 15 minutes. 

Frankie Washington is a graduate psychologist who is training to be a clinical psychologist. Dawn Langdon is Professor of Neuropsychology at Royal Holloway, University of London.

'Not all disabilities are visible’ - International Day of People with Disabilities

Posted on: December 03 2020

Martin profile 4.jpgThe theme for this year’s International Day of People with Disabilities is as unequivocal as it gets, ‘not all disabilities are visible’.

The message is not unique as anyone who is already aware of the Sunflower Lanyard scheme can confirm. But more than that, from a gradual decline in my own circumstances over the last year, I’ve noticed a change in the attitude I experience when I am out and about, and it is this. People are more aware.  Kinder. And understanding.

Nowadays, my motor skills sometimes scrape the bottom of the multiple sclerosis (MS) barrel. Messages from the brain to my legs get embarrassingly confused and play merry hell with my centre of gravity. I have to confess that these days it is less than easy to walk a straight line without my feet taking me on a journey to the left or the right of the pavement, whether I want to go or not.

People still stare, sometimes. After all, it’s only human nature. But these days not in a way that makes me feel like I am an exhibit of P. T. Barnum’s circus.  In restaurants or coffee shops my knees sometimes struggle to support my body weight when I try to rise from the table.   

It’s not the most pleasant of experiences but it happens, of course, it does, but that’s when I endeavour to wrestle control over a situation where I have none at all. Because the MS is mine it’s up to me to reassure the crowd – and I do still have the ability to draw one – that everything is fine because this is not the first time it’s happened to me that day.

To carry an expectation – or even a grudge - against others for not understanding my sometimes muddled speech or incontinent thought process is not who I am. Or at least not anymore. Why make strangers feel uncomfortable?  It’s nobody’s fault I have MS and I will tell whoever needs my reassurance that everything is under control. That everything is ‘cool’.

Being an MS blogger has put me in a position of MS privilege. I am at the coalface of disability activity. I am the embodiment of disability action. I no longer have the need to hide my disability behind my cabbage stalk walking stick. I wear my sunflower lanyard as a badge of honour. 

I am Martin Baum.  I am a proud MSer.

#LiveLifeNotMS

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