The Shielders & The Vulnerable
This month sees the community of Rare Diseases coming together to raise awareness around the world. With CORONA around this is of greater significance and the speed of diagnosis, treatment, support networks and the opportunity to be connected to sport and exercise opportunities needs to become accessible as well as the barriers and obstacles understood. But also how they can also be reduced and managed.
There are now such regular mentions of the ‘Shielding & Vulnerable’ within political speeches and pandemic news that it could be assumed that these individuals and specifically those shielding would have be considered to have a 'rare disease’ and perhaps the same for the vulnerable. In truth this is categorically wrong. Although this is a valid statement to assume. So why this group in amongst Rare Disease month? How are these groups defined? Plus, how does it translate to access to Sport & Exercise?
The difference between shielders and the Vulnerable needs to be distinguished. There is a common misconception that those shielding are seriously ill/disabled and in some cases that is true. However, for many they lead a for filling and active lifestyle having had treatment for something such as cancer, organ transplantation, endured a significant neurological disorder or are required to take medication which means that they are extremely vulnerable to infection, putting them at significant risk if they were to contract COVID.
The Government has despatched letters from Matt Hancock (Health Secretary) to the Clinically Extremely Vulnerable setting out what they should do to keep themselves safe and well during lockdown. This and the reality of what people are able to/choose to do can be very different things. Within this we have a clear definition of what this actually means and the summary reports that;
‘Clinically extremely vulnerable people are advised to stay at home as much as possible. You can still go outdoors carefully to exercise or to attend health appointments. You are strongly advised to work from home if you can. If you cannot work from home, then you should not attend work.(https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/952748/Clinically_Extremely_Vulnerable_Letter_Jan_National_Lockdown_Final.pdf)
Taking this theme further an example of what those who are clinically extremely vulnerable realistically looks like. A Day in the Life of a Shielder follows 37 year old Anisha who has lived with ulcerative colitis for 13 years. She has not left the house except for attendance at a few medical appointments since the pandemic began in March 2020. She shows incredible strength and resolve. It highlights the difficulties that are faced on both a mental and physical level. However, it also demonstrates how she still manages to work despite needing regular breaks, struggling to even get outside for fresh air (https://www.cosmopolitan.com/uk/body/a35277944/pandemic-diary-shielding-ulcerative-colitis/). Despite all these problems Anisha works from home, is a Zumba instructor and an ambassador for This Girl Can and We Are Undefeatables.
Another example of shielding comes from Darren Armitstead who was Diagnosed with type 2 diabetes in 2018, at age 50. As part of the We Are Undefeatable Campaign for those with LTHC’s he says that;
‘Some things are out of our control and we can’t do anything about them. But the things we can control, we should. Like keeping physically active’. https://www.diabetes.org.uk/your-stories/darren-keeping-active-while-shielding
During the pandemic he has had to shield because of the medication he takes but has taken the opportunity to create his own gym around the house and garden. These examples show how exercise can be incorporated on a stay at home basis when people put themselves under the tightest of restrictions to keep themselves safe and well.
In other cases people may be reluctant to ‘stay home’ or at least get themselves out of the house every now and again. Shielding through the winter months is significantly different to staying home and getting out into gardens, balconies or even just having all the windows open to bring in the senses of smell, sight, hearing, watching, tasting and touching that flows with nature through the warm summer sun and fresh breezes bring. Hence, the reasoning for the Government to provide Vitamin D supplements to provide the replacement/top up that may be required for those who cannot access any proper fresh air and fall into the shielding category. You can find out more about this in the article How to take Vitamin D Safely produced by GOV.uk
Vulnerable Individuals
The majority of people with LTHC’s and disabilities will fall into the Vulnerable group and whilst there are numerous charities, associations and campaigns to support these people, the long term effects of social deprivation, anxiety and additional stress on the body and feeling fearful and unsafe to venture outdoors are just a few of the areas we need to navigate. The Article ‘Help tackle loneliness among disabled people this Christmas’ (3 December 2020) by Disability Sports Coach reported that;
’67% of Disabled people have felt lonely this year (2020), Disabled people are 4 times more likely to feel lonely and 41% of disabled people are inactive compared with 20% of non-disabled people’.
The vulnerable group also includes individuals with Rare Conditions such as Addison’s Disease and Pituitary Insufficiency that were the focus of Time To Heals ‘Rare Disease Day’ blog which you can access here. The number of people in the Vulnerable group is huge with a wide range of medical conditions, many of which can also be life threatening /life-limiting. This could include asthma, dementia, heart conditions and diabetes. It is important to recognise this and accept that the people who are essentially ‘categorised’ into these groups are all at risk and deserve to be heard even if their conditions aren’t rare. They are more widely recognised and accepted though which demonstrates the difference between rare or not. However, not all rare conditions are life threatening yet many in the ‘vulnerable’ are so it works both ways.
Time to Heals Blog kicked off this series and looked in depth at two conditions that have a serious impact on the lifestyle of Pituitary Patients. These are Pituitary Insufficiency and Addison’s Disease, how they can be managed and alterations that can/have to be made to enable participation in sport/exercise, the challenges that brings, the anxiety it can cause and sensible adaptations required. It also looked at Action For Happiness, a Charitable Organisation who through extensive research have identified 10 Key Steps including exercise and health management to support people with a well rounded programme. You can review this here.
There should be time to learn, discuss, support and apply strategies in order to achieve some clear steps that can be taken to make a significant difference to the lives of many individuals across the country. So what effect does this pandemic have on them? What we do know is the Impact on Mental Health is going to be paramount and exercise and sport has a part to play in that. So how do we help and support these groups through this pandemic….
Starting with Healthcare Professionals who have a very significant role to play in this has seen the Government launch and begin to implement ‘Moving Medicine ’Rt Hon Matt Hancock MP, Secretary of State for Health & Social care states that;
I am delighted to launch this brilliant web tool for healthcare professionals – I hope it will help pave the way for a culture shift in medicine where referrals for exercise are just as common as prescriptions for medication.
This is followed up byDr Paul Jackson, FSEM UK Immediate Past President who comments that;
‘Moving Medicine will ensure that all health care professionals have up to date information on physical activity presented in a useable, easy to understand format, enabling them to inform their patients and motivate them to become more active’.
Whilst not everyone with a medical condition will consider themselves disabled or need the intense support of healthcare providers, this gives us a starting point for the barriers and obstacles that stop people exercising which can include;
Space
Time
Mental Health
Support Bubbles or lack of
Access to Technology
Managing a difficult Health condition
Access to coaching opportunities
Staying connected with team mates and fellow exercisers
The need for clear guidance on safe ways to move
Ability to recognise the right pathway for each individual/yourself.
So what options are available to this group?
Although the obvious place to look for support to enable you to progress and move forward into a better position to exercise are charitable organisations, there are other programmes, app’s and books that can also help you get there. Perhaps you just need a bit of sparkle dust to get you back on track! But charities are really stepping up and producing great exercise activities for their target audience as a progression towards all round well being.
This great chart from The British Red Cross gives us a great place to start. Following the simple steps of considering, acknowledging, listening, managing, enabling and then what resources are available. Allowing individuals to recognise their needs and then it’s up to the world of virtual delivers/providers to produce what is needed through targeted campaigns and local provision, whilst ensuring that participants/potential participants can access this content easily and at the appropriate level and intensity.
A Downloadable sheet planner from We Are Undefeatables will help you/participants to focus on what you want to achieve or support others to achieve and how. It’s baseline level and followed up with numerous great resources. This includes exercise links to a number of UK charities all supported by Sport England.
As this lockdown is through the cold it’s no wonder that those with the painful joint conditions and conditions that affect the lungs will potentially want to stay indoors in the warm rather than venturing out. The snow and ice can be off putting for the who aren’t as stable on their feet for fear of falls. Another tricky scenario for those with LTHC’s and disabilities is pain levels and when to exercise and when not to exercise. It is a very difficult question to answer and will be very much focused on an individual and how badly you are affected by your condition. Finding the right balance can be a challenge and mistakes will be made. It’s ok if things if things go wrong. What works one day might be impossible the next. Sometimes you should just be proud that you made it through the day.
Let’s take asthma as an example, this seems sensible considering it is affected by the cold and of course it’s a condition affecting the lungs, which should an individual contract COVID or one’s trying to avoid contracting and especially those with severe asthma, the potential difficulties could be significant and have a huge effect on the severity and recovery from infection since the lungs would be put under extreme pressure. Many see asthma as a common condition but don’t realise how serious it can be.
This Asthma UK Webinar is a part of a series of Corona Virus Videos. You can find the full playlist here. This includes advice on having a remote appointment to looking after your asthma, preparing for self isolation and advice on changes in the level of medication that you take. You can also access some meditation, try yoga, access creative art therapy and seek special advice for children. This blog Winter Running With Asthma by Miss Wheezy shares some top tips on running outside, although this won’t be possible for everyone. (https://www.misswheezy.co.uk/2021/01/winter-running-asthma-and-cold-weather.html/)
Versus Arthritis are well placed to inform us about problems with painful achy joints and offer some help with some simple tips on pain and when to exercise and when to rest as well as a free weekly movement session delivered to your email inbox. They have some specific advice in his article that includes first steps, motivation, useful resources and podcasts.
Whilst this resource from Age UK Staying Safe and well at Home exercises has some guidance on some really quick and simple exercises to do. They are at a low level but also make a huge difference.
Although these examples are structured for set target groups, the beauty of them is that you can access them whatever medical condition you have. It’s about finding your right match and if you have multiple conditions then this is a fantastic way to help you manage them all.
Alternative Programmes and Activities away from charities are being created all the time. There are some great links produced by Sport England and the NHS, so you can be reassured that what they offer or promote is safe and accessible.
Perhaps the most influential one is ‘Uniting the Movement’ by Sport England which is a 10 year strategy that aims to get to the Heart of The Nations Recovery through sport and exercise. Significant consultation within the sport and activity sector has identified the long term vision of this programme which are reported as targeting;
‘The issues that were still important before Covid-19 struck, but are now crucial. At it’s heart, our strategy seeks to tackle long-standing inequalities that have existed within our sector and been reinforced by the disruption of the pandemic.We know that for certain people, such as disabled people, people from lower socio-economic groups and people from Black and Asian backgrounds, there’s a clear pattern of low levels of activity. As a result, Uniting the Movement demonstrates our focus on providing more opportunities for those who are being left behind.(https://www.sportengland.org/news/new-strategy-puts-sport-and-physical-activity-heart-nations-recovery)
Join The Movement is one of the programmes running by Sport England to help achieve these goals.The launch of this programme is defined as;
‘A selection of online exercise platforms with on demand fitness content who either provide free access or have teamed up with us to offer extended trials’.
They continue with;
‘So, whether it’s first thing in the morning, a break from the makeshift home-office at lunch, or a way to kick off your Friday night, this content is here for you, when you need it.
Join The Movement With Children is also a fantastic resource to keep your family moving. It includes; Disney Workouts, a Travel To Tokyo activity programme for 5-11year olds, Cosmic Kids Yoga and how to complete the Daily Mile from home. All great activities that children are missing out on with schools in lockdown and brilliant to get families active together. Some help with home schooling can also be achieved.
The NHS Fitness Studio is a great place to look. A wide range of sessions from 10 minutes to 45 minutes including, aerobic exercise, pilates, strength, resistance and yoga.
For those with LTHC’s and disabilities the additional anxiety and concern for their health can also have a significant impact on sleep. Sometimes this can be caused by medication and with others purely not able to switch off. So good sleep hygiene will ultimately help with this. Breathing techniques such as mindfulness, meditation and yoga are favourites and readily available.
In this 30-minute video, NHS Bedtime Meditation‘ instructor Beth's soothing words and relaxing moves help you leave the stresses and strains of the day behind and prepare for restful sleep. Although this video is ideal at bedtime, you can follow it whenever you need to take time out to relax’.
The Sporting Environment/Coaching Of Athletes
It is worth remembering that there are millions of people who could be shielding or vulnerable and be high level sports performers. Take for example someone who has had an organ transplant and qualifies for the World or European Transplant games. How do we enable them to maintain their fitness? They may well feel rejected and isolated from others. Although elite athletes are still being able to participate and compete in their specific sports, that is also with some restrictions and guidelines. What about those just below this level? How are they feeling? Will they want to return to the sport afterwards or be left feeling resentful and disillusioned or even cheated of their opportunity to make their National Teams, especially in sports that are difficult to transfer to home or daily exercise provision such as Swimming and Gymnastics.
Despite being very privileged and supported to be able to train, elite athletes that are travelling and competing will also require some periods of isolation in line with Government Guidance and will need to maintain their fitness during this time. With both The Olympics and Paralympics taking place in Tokyo this year some athletes will be very anxious and finding training more difficult or feeling left behind. With other countries seeming to ease their lockdowns and restrictions ahead of the UK.
Sport England Campaigns are a great starting point. This link provides information including;
Code for sport Governance
Mental health
National centres
Local delivery and
Disability.
Activity Alliance is offering a range of Inclusive Activity E-Learning modules which are a great place for coaches and instructors to start and can be done from the comfort of your home during lockdown. Some great Professional Development and there are also some great documents that you can download here. Even future participants may find this useful as could those missing their sport so much could utilise this to focus the mind and fill some of the time usually spent training.
National Governing bodies are also great supports and doing everything they can to help clubs plan for the future and support their athletes/clubs through the pandemic. A great example is British Gymnastics who have produced this Step Forward Plan. It makes up part of their Corona advice page which includes a section on safe Gymnastics at home.
Our Conclusions and practical steps as to how can we overcome the barriers to more advanced exercise and well being are as follows;
Allow time for the Moving Medicine problem to be implemented
Utilise exercise programmes and advice from Health & Well Being Charity Sites
Look beyond your own charity and find what works for you.
Use The Resources Produced by the NHS
Look to Supportive organisations such as Sport England
Reach out to National Governing Bodies for support
Keep up to date with the GOV.uk regulations and procedures
Undertake some e—learning and further your understanding of the sport you love
Develop sessions that can be completed at home
Take the opportunity to work on sports psychology and experiment with nutrition
Browse online content
Utilise exercise equipment
Stay Connected through social media platforms
It is essential that where LTHC’s and Disabilities are concerned Health care Professionals and Health related Charities are involved in the process, especially if the exercise is a new addition. Whilst higher level participants and athletes/coaches will be able to adapt and support more easily because of previous participation and success/support that they can already access. So don’t let that cold, snowy winter get to you! There is always something that can be done to make things feel a little easier! Find the right balance, listen to your body and enjoy your pathway through to what we hope will be better times.
See below for links from the blog post….
GOV.UK January Lockdown Letter To Those in the Clinically, Extremely Vulnerable Category
A Day In the Life Of Anisha - Shielding
Darren’s Story About Shielding
Government Advice On Taking Vitamin D
Disability Sports Coach
Time To Heal - Welcome To Rare Disease Month
Action For Happiness
Action For Happiness - 10 Keys Programme
Moving Medicine - For Healthcare Professionals
We Are Undefeatables Planner Sheet
Asthma UK - YouTube Channel
Winter Running With Asthma
Versus Arthritis - Where to Go For Information
Age UK Corona Virus Advice & Safe Home Exercises.
https://www.ageuk.org.uk/information-advice/coronavirus/staying-safe-and-well-at-home/home-exercises
Sport England - At The Heart Of The Nations Recovery
Sport England Join The Movement
Sport England - Join The Movement With Children
NHS Fitness Studio
Bedtime Meditation - NHS
Sport England - Uniting The Movement Strategy
Activity Alliance - Launch of New E-Learning Programmes
Activity Alliance - Downloadable Resources
British Gymnastics Step Forward Plan
British Gymnastics - Safe Gymnastics at Home
Coming up…..
Happy Rare Disease Day!
So in this the finale of the series around rare diseases we want to share some stories, medical conditions and most importantly how you can access exercise and physical activity or provide it, whilst respecting the conditions people have to overcome, acknowledging that they exist and showing compassion and support.
We have looked at what rare diseases are, the charities that support them, scientific ways to approach treatment and explored the differences between Rare conditions, those that fall under Shielding and Clinically Vulnerable and the Vulnerable.
Let’s set out on the basics of Rare Disease Day itself!
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