Guest Post | NHS Funding

Resource Allocation: A classic medical ethics topic that often rears its head in the inevitable reality of working in a cash-strapped public healthcare system.

Should the NHS fund this new expensive treatment for a rare disease?

Should the government pay for a new experimental cancer treatments?

Should X procedure be on the NHS, or Y?

The list is endless.

This blog covers a few basic ideas and concepts for you to broaden your understanding of why things are done as they are, enhance your opinion and help you think of the bigger picture.

Utilitarianism

One way of analysing resource allocation is using a utilitarian approach. Utilitarianism describes the moral theory that the most moral action is that which maximises the happiness (or in this instance healthiness) of a population. This seems quite a nice logical and fair systematic approach, but has one major drawback.

How do you quantify the benefits gained from a specific treatment?

Fortunately, Alan Williams, a health economist calculated a measure for doing this – the Quality Adjusted Life Year. This system described not only the length of life a specific treatment can give a patient, but also factors in the subjective quality of that life.

Interestingly, some of the ‘best’ treatments by this system including cataract surgery and hip replacements, owing the massive improvement in life these can bring (even though they are rarely viewed as life extending). However, despite quantifying the ‘best value’ treatments, this system still has its drawbacks.

Firstly, many argue that this system ignores both the old, and the chronically ill. The old will have fewer ‘life years’ per treatment and the chronically ill will have a lower ‘quality of life’ per treatment by this system, and will thus lose priority in this system.

This a great concept to think about as many new drugs are for specific diseases, which are often rare and chronic, or those which affect the elderly. Secondly, ‘quality of life’ is a highly subjective term, and, although this system goes someway to quantify it, the end result is still a subjective rating score.

Egalitarianism

Another way of analysing these topics are through an egalitarian approach. This theory states that resources should be distributed equality unless an unequal distribution would work to everyone’s advantage. However, in reality, there is not unlimited funding and therefore equality of distribution means that expensive treatments (the new drugs often featuring questions) could not justifiably be funded.

This approach does promote a decent minimum standard of care (good for everyone) and some argue that more expensive treatments can be funded elsewhere. For example, charities and private companies could find a place in an egalitarian healthcare system to fund more niche treatments.

Libertarianism

Another viewpoint worth nothing (though one which many, especially in the UK, would be against) is that of libertarianism. This system states that healthcare should follow individual liberties and free market principles – i.e to be privatised. This is an interesting viewpoint to discuss, but, given the many drawback of private healthcare and the NHS in the UK, it’s not one we in the UK really consider.

So, there we have it, a few basic approaches to the classic question of ‘should we fund this expensive new drug’.


This guest blog post is provided courtesy of writer Adi Sen, from the website UniAdmissions.

Disclaimer: The views and opinions expressed in this article are those of the author (UniAdmissions), and do not necessarily reflect the official policy or position of myself or any other organisation.

Guest Post | Hypothermia Prevention

Today I bring you another guest post from Michael Leavy, Managing Director of Home Healthcare Adaptations, a family-run company that specialises in adapting homes for the elderly and less abled.

Michael kindly provided a previous guest post, (How Seniors Can Feel More Secure At Home), which you can view here.

Infographic | How to prevent hypothermia in older people

The risk of hypothermia is at its highest during the winter months. That risk is even greater for elderly people, as their lower metabolic rate makes it harder for their bodies to retain an ideal temperature. Also, they might not detect extreme cold as readily as others, and could have chronic medical conditions which would exacerbate the onset of hypothermia.

If you see signs of hypothermia in an elderly relative, keep them as warm as possible. If the situation seems serious, call NHS 111 for expert advice and guidance.


The infographic below from Home Healthcare Adaptations explains what to do if you think someone is experiencing hypothermia, along with preventative measures they can take to reduce the likelihood of hypothermia.

The harsh winter months affect a high population of the UK with a spate of Flu and other seasonal illnesses. But for the elderly and immobile, freezing conditions can lead to far more serious conditions requiring hospitalisation.

Elderly people are generally at greater risk of hypothermia than most others for several reasons. Their lower metabolic rate makes it harder for their bodies to regulate temperature in cold weather, while the presence of chronic health conditions reduces their immunity to hypothermia. Also, a deterioration in the senses could make it more difficult for an elderly person to detect decreases in temperature, hence they might not take immediate preventative action.

If you have elderly/immobile relatives or neighbours, check in on them throughout the colder months to ensure they aren’t showing any warning signs of hypothermia.

Symptoms of hypothermia include:

  • A rapid deterioration in physical appearance.
  • Extreme shivering or an occurrence of sudden, inexplicable body movements.

If you notice any of these in an elderly person during cold weather, call 999 straight away and, while waiting for the emergency services to arrive, move them to a warm place and wrap them in a warm blanket or coat.

Don’t put them in a warm bath or give them an alcoholic or caffeinated beverage!

Guest Post | Home Healthcare Adaptations

Today’s post is a guest feature from Michael Leavy, Managing Director of Home Healthcare Adaptations, a family-run company that specialises in adapting homes for the elderly and less abled. 


How Seniors Can Feel More Secure At Home

It is frightening just how many older people’s homes are subjected to burglaries and break-ins. Worse still, seniors themselves are targeted by malicious criminals with no respect for human life.

Thankfully, there are measures such as alarm systems, CCTV and doorbell cameras which can improve the security of a person’s home. These could be well worth investigating for elderly relatives.

All too often, we hear about elderly citizens having their houses burgled or, even worse, being attacked in their own homes. It takes an especially cowardly individual to deliberately intrude upon an elderly person’s homestead and threaten to inflict violence on them, but sadly these types of incidents occur with regularity.

Therefore, we should advise elderly relatives living in their own houses to take no chances when it comes to home security. No matter how much a security system or other measures might cost to install, the value to be derived from the peace of mind that it’s there is 100% worthwhile.

If an elderly parent living by themselves knows that their home is as secure as it can be, they will feel far more comfortable and we will be at ease knowing that they feel safe.

Home security has been made easier with the advent of automated systems which enable homeowners to set alarms remotely, switch on lights at timed intervals and monitor the house while away.

A burglar will usually be able to tell when a house is unoccupied, so even if they feel that the opportunity is right to strike, home automation can catch them in the act and allow for corrective action to be taken straight away.

We should also check in on elderly parents or neighbours regularly and advise them on small things that they can do to improve the security of their home. Simple measures like giving a house key to a trusted friend or family member instead of leaving it under a welcome mat, or keeping any valuable items obscured from the viewpoint of anyone looking into the home, will help to make them feel more secure.

The infographic below from Home Healthcare Adaptations offers some sensible pointers on how you can make elderly parents feel more comfortable and secure in their homes.

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Featured | Age UK Mobility


I was recently contacted by Age UK Mobility, and invited to feature in an information piece about surviving the harsh, British winter.

‘The Ultimate Winter Toolkit’ offers helpful advice and tips for elderly and disabled people.


👉 Check out the article here


🌟 Below: Read my contribution to the Age UK Mobility article 🌟


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Life, Stress & Coping Strategies

While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.

I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.

I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.

For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?

My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.


Here are a few of my coping mechanisms:

1. Music therapy ~

Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).

(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)

There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!

Here is a recent guest blog post I wrote for Mitch Coles, listing some of my top tunes!

2. Time with loved ones ~

Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.

He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…

3. Alone time ~

Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.

4. Get out the house ~

Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.

5. Avoid social media ~

It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.

This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.

Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.


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Disability & Chronic Illness | Experiencing More Joy

Experiencing more joy might seem a long way off to you, or even impossible to achieve. However, you can improve your happiness simply by adapting your everyday activities, habits and way of thinking. It may sound harsh but it’s important you first choose to stop being a victim of circumstance and start being the hero of your own life!

This is your own unique journey, and you can still make it positive and fulfilling if you are determined enough. Below we have some ideas for finding joy in your everyday life, no matter what your disability, illness or condition. Take a look…

Image Source

Don’t Try To Ignore Or Suppress Your Feelings

First thing’s first: you should not suppress or ignore your true feelings when you begin to feel them.
Inflicting self-judgement and criticism will only have a negative impact. However, this is not to say you should force yourself to feel positive all the time – this just isn’t realistic. We all get down and feel lost and hopeless from time-to-time. Allow yourself time to grieve for whatever or whoever you have lost throughout your life.

Healing Is Not Linear

Healing does not happen in a straight line – it isn’t linear or consistent. One day you may feel great, and the next day you might feel worse than ever.
Write Daily Gratitude Lists
It is hugely beneficial to keep a physical record of all that you are grateful for. Try to get into a regular habit of doing this everyday. It will keep your mind focused and positively proactive.

You might be grateful for your job, friends, family, your home, health and so on. These are just a few ideas to get you started. Try to be specific and review how many different things you can come up with each time you write your gratitude list.

Setting Daily Goals

When you get up each morning, try to set an intention for your day. How do you want to feel today? Is there a specific task or chore you’d like to accomplish? Setting daily goals or intentions can help your day run smoother. As a result, you should find yourself making faster progress towards improving your mood and well-being.

Appreciate At Least Three People Every Day

Whether it’s your partner or a considerate stranger – nurture the important relationships in your life.
Are you appreciative of the people who perform your home care services?
Appreciate The Small Things
You don’t have to have lots of money, possessions and exciting things going on in your life to feel good about it. Appreciating the really small things is important too. Whether you’re reading a good book, chatting with a friend, enjoying a hot cup of coffee or simply watching your favourite TV show – find the enjoyment and fulfilment. The way you frame things in your mind has a lot to do with how happy you feel each day.

Learn To Love And Accept Yourself

Most people find this tough, let alone those with limitations who maybe struggle with things that others don’t. Learning to love and accept yourself will likely be one of the toughest things you set out to do, but it’ll be one of the most worthwhile and important. Don’t compare yourself to others, and find things that you really love and appreciate about yourself every day.

Becoming your own best friend will enable you to always feel comfortable in your own company and never feel the need to escape from yourself.

Join A Support Group

If you want to meet like minded people and share stories and advice, joining a support group could be a great idea. Check out support groups in your area and visit them to see how you feel.

Accept Help If You Need It

If you need help, please don’t be afraid to ask for it – it DOES NOT make you weak. Taking care of yourself and getting other people to help take care of you, whether mentally or physically, is nothing to be ashamed of – quite the opposite. It’s natural to want to maintain as much independence as possible. However, seeking appropriate help and support will allow you to do this for much longer.

Develop New Hobbies And Find Things That Make You Truly Happy

Developing new hobbies is a wonderful way to find happiness. Perhaps you could join a book club, learn to play an instrument, write poetry, paint, draw or do something else with your time – whatever you want to do, just give it a try!

Exercise In A Way That’s Possible For You

You may not be able to exercise much, if at all, but there are likely a few things you can do. Rolling your feet in a circle or moving your head from side to side, for example. Whatever physical activity that is within your limits, do it regularly.

Eat Well

Eating healthily will make you feel good from the inside out. Learn how to read and understand nutritional labels and aim to get plenty of vitamins and minerals into your diet.

Tricia Downing | Paraplegic, Sports Woman & Novelist

Fiction novel ‘Chance for Rain’ shows disability experience for what it is: another version of the human experience

Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.

Tricia Downing

Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’.
Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit.
Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies.
She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.

Visit Tricia: www.triciadowning.com


Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…

Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”

“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”

“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”

“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”

“Will anyone actually love me if I have a disability?”

“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”

“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”

“I think,  so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”

“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”

“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”


Chance of Rain

Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.

‘Chance of Rain’ by Tricia Downing is now available to buy from Amazon

Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


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Interview | Jackie Hagan

Disabled Poet and Performer

Award winning poet and performer Jackie Hagan’s latest show, ‘This is Not a Safe Space’, explores the impact of benefit cuts on disabled peopled and those living on the margins of society. The creative mix of poetry, puppetry, stand-up comedy and audience participation draws on first-person interviews with 80 working-class people. With an emphasis on class, mental health and disability, Hagan celebrates the weird and wonky lives of those excluded from the mainstream.

Jackie Hagan is herself a queer, bipolar amputee, raised on a council estate. Her work seeks to challenge the ways in which current society relentlessly stereotypes working-class, disabled individuals.

Following on from her previous success with the solo show ‘Some People Have Too Many Legs’ and her play ‘Cosmic Scallies’, this theatre maker once again intertwines spiky humour and quirky expression, resulting in a passionate, provocative and affecting production.


1. Jackie, could you please tell Disability Horizons readers about your disability and how it has affected you and your career?

In summer 2013 I suddenly had my leg amputated [following a series of blood clots and infections]. When I left the hospital they gave me a list of things to avoid, one of them was falling over. I toured a show that year called ‘Some People Have Too Many Legs’, which won some awards.

I had been writing and performing for some time and I had always been a disabled performer – I am partially sighted, have bipolar disorder and a life limiting autoimmune disease. But, having one leg is something people can get their heads around a lot better, people like something they can see. And so it attracted a lot of attention.

As such, when people invite me to diversity events to talk about the leg I often open with a leg gag and then go on to talk about invisible disabilities or class.

2. How and why did you become a poet and performer?

When my Mum was 16 she moved from the thrill and glitter of Liverpool to an isolated new town to have me and my brother. As such, she herself became a disco, she became thrill and glitter. How else are you meant to cope? It meant I grew up to be unafraid to speak my mind in the odd way i found natural. I wasn’t ever encouraged to toe the line or be normal.


3. How does your class, background and disability influence your work?

It means I’ve always got a cob on and I’ve got loads to say that doesn’t often get said. I’ve got council estate bones and they rattle when someone slags off a young lad for dealing or looting or having a big massive telly. I understand why this stuff happens. I’m not saying we’re saints: I’m not an idiot, but I’m closer to the action, I can talk in a measured way about the real reasons. I can give you stories and images that aren’t exaggerated or underplayed. I know what I’m on about.

Obviously it also means I come up against a tonne of prejudice and moments where people tilt their head to one side and use that sing song lilt to the voice “aw, are you in a wheelchair?” etc. It’s all total bollocks and the most satisfying way to show people is by being awesome.

4. Why did you decide to write this show, and why now?

Disabled people and those on benefits are represented in the media one dimensionally. Benefits claimants are shown as sinners: [the TV show] Benefits Street depicts us as if we’re stupid and should just try harder. Disabled people on the other hand are represented as saints, super-humans and paralympians. Real people just aren’t like that.

5. What is the meaning of the title of your new show?

I asked one of the lads I interviewed, “where do you feel the safest?”                 He thought for ages and eventually he said, “in my imagination”.

The government has messed up, massively. People are committing suicide and losing their homes. We’re obviously not safe. The new generation of kids have no security in their future, never mind jobs and homes. They’ve got climate change to worry about! Of course they are obsessed with safety, of course they need to create safe spaces.

People might be used to my old work where I would make hard topics fluffy and palatable. But in this show I need to give it to people straight. That doesn’t mean it’s unrelenting bleakness – no one can take that in, and audiences don’t deserve to have to put up with that. I know how to keep an audience with me. There’s lots of comedy and tenderness in the show, but i also know how to give an audience realities that need to be passed on. We desperately need people to empathise.

We are not safe. It is not fair. The world is not a safe space. The show is not a fairytale.

6. It celebrates and puts forth the lives and experiences of a section of society often misrepresented or ignored entirely by the mainstream. Why do you think that is?

If you [society] ‘other’ us, then you can feel less empathy and understanding. If you lack empathy, it gives people a free ride, it makes the problem go away, because it means we don’t matter.

7. Based on 80 interviews, your show intertwines poetry, DIY puppetry and stand-up comedy. That’s quite an eclectic mix! How do you begin to plan and produce such an original and engaging piece?

Humans don’t think in linear stories, we think in snippets and recurring images. It makes absolute sense to me to collect voices and stories and for me to keep on writing and writing. I then siphon it all down into central questions that I want the audience to think about, and eventually get right down into the essence which is the hour of the show.

In real talk that means A1 flipchart paper, post it notes, about a thousand gallons of tea and one amazing sound producer (Dave James who sat in a room and listened to 16 hours of interviews with me several times). I eat when I make stuff and put on about two stone. But I’d rather be a fat writer than frustrated and at my ideal weight!

8. What do you hope audiences will take away from the show?

  1. One person’s trying doesn’t look like your own.
  2. You don’t have to feel guilty for what you have. It’ll get in the way of you wanting to help.
  3. Classism is constant and as abhorrent as racism, sexism and homophobia! Learn to recognise it.


I’d like to thank Jackie Hagan for taking the time to speak with me.

My interview with Jackie was originally published by Disability Horizons, for whom I am a frequent contributor.


Connect with Jackie Hagan on Twitter and visit her website for news and more information.

Interview | Scott Watkin: SeeAbility

36-year-old Scott Watkin, an eye care and vision development officer with the charity SeeAbility, is one of this years deserving recipients of the British Empire Medal.

Scott, who has learning disabilities and the eye condition keratoconus, is recognised for his tireless work in the learning disability community.

A dedicated ambassador, Scott began his career co-chairing the learning disability partnership board on the Isle of Wight. This led onto an influential role as co-national director for learning disabilities within the Department of Health. He also lectures at the University of Hertfordshire, focusing on eye care, vision and equal rights. However, he notes his work with SeeAbility as a major milestone.


1. Scott, could you please tell Disability Horizons readers a little about yourself and your disability?

I was born with Williams syndrome which is a learning disability. Apparently I am one in ten thousand! Some of my muscles can be quite weak and my coordination can be not great at times.

I went to a special school and teachers never really paid attention to me, and it meant I didn’t really get the grades I wanted to get. I was bullied too which made learning very hard.

It also means I am more likely to have vision problems and actually I was diagnosed with keratoconus which I’ve had two corneal graftoperations on. I have quite a difficult daily routine involving eye drops and contact lenses.

2. How does your learning disability and eye condition affect you, and how have you found working with a disability?

My learning disability only shows when I’m nervous or worried about something, otherwise I’m a very confident person. I just need a bit of support to do my job and I’ve been really lucky to be supported well at SeeAbility.

My vision varies, some days it’s ok some days really poor. But I’m always ready to work!

3. What adjustments have you and/or your employer had to make in order for you to do your job effectively?

If I don’t know a journey, my manager will meet me in London and we will continue the journey together. I know my way from the IOW to London very well having made the trip many times.

If my vision is really poor, we put all my information on yellow paper in Arial 16pt font. This helps me to read it better.

When I first started working, I had lots of support to make steps in my job. But for me it’s just being able to talk to someone when I need to, and that’s the case at SeeAbility. If I don’t need that then I just get on with my job and carry on!

4. How and why did you get involved with the charity SeeAbility?

I first met Paula Spinks-Chamberlain (Director of External Affairs) at the Department of Health. SeeAbility supported me through my keratoconus and then I did some work as an ambassador. After that I was offered a job!

5. Could you please explain the role you play within SeeAbility?

I’m an eye care and vision development officer and I make sure people with learning disabilities get good eye care. I travel around the country giving training sessions to people with learning disabilities and carers. I need to make sure we lobby government to make sure they understand that eye care for people with learning disabilities is really important.

People with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.

6. You are also on the board of Learning Disability England. What are your aims and objectives in this capacity?

I try and make sure people with a learning disability have a voice. People with learning disabilities need the same access to services as everybody else.

It’s about setting the direction of learning disabilities in England. Lobbying government and challenging the social care cuts. I need to make sure we do what we say we are going to do.

7. Why is it so important to you to campaign for people with learning disabilities?

Firstly, people with learning disabilities are much more likely to have sight problems than other people. Not only that, but they are the least likely to get the eye care they need. We are working so that eye care professionals make reasonable adjustments but what we really need is a national eye care pathway so that everyone with a disability can access a sight test.

Secondly, people with learning disabilities deserve to have their voice heard. We deserve the same opportunities as everyone else as we have so much to offer. We just need the chances to shine.

8. What do you think are the main issues that require attention and improvement?

We need to stop the social care cuts and get a good eye care pathway down for people with learning disabilities so they can get the right eye care!

We need good annual health checks.

And to make sure the government take people with learning disabilities seriously and listen to what they want. For example, most people with learning disabilities want to work, and we just need employers to give us chance so we can achieve what others can have a good life.

9. Congratulations on being awarded a British Empire Medal in the New Year 2018 Honours list. How does it make you feel to be recognised for your achievements?

I never thought I’d be recognised in this way, it’s a real big honour. I’m glad my work is being recognised nationally because it’s really important. It sends a message to all the eye care professionals that I work with, they need to know how important eye care for people with disabilities is.

10. Finally, what tips would you offer anyone like yourself with a similar disability, who is seeking employment?

Don’t stop trying to find employment. Don’t be afraid to say you have a learning disability and it’s ok to ask for reasonable adjustments. You will have so many positives to bring to any role and don’t forget that, you are actually very reliable, more than other people!


I’d like to thank Scott Watkin for taking the time to speak with me.

My interview with Scott was originally published by Disability Horizons

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