Labour published minutes of meetings between UK and US trade officials. And although direct evidence that the NHS was ‘up for sale’, drug prices and patents were discussed a number of times…
The bottom line was that the US officials were pushing for increased drug prices. This was in addition to discussing length of patents, which if decreased, would affect the standard of drugs coming into the country.
Drug pricing can seem like an abstract concept but it does have a very real impact on people’s lives.
Currently there are many new drugs that are unaffordable for the NHS.
Here is a video showing a very real story:
Drug Prices In The USA
The bottom line in the USA, every day prescriptions, medicines that are vital to some people’s every day lives such as insulin are out of control.
Here’s a video on the problem of the cost of insulin in the US.
Reuters found that since 2012 has almost doubled AND as you will see in the video, medical professionals do not know how many people are DYING.
But free market economics says that growth is essential for prosperity. The problem when we apply this model to drugs is that market saturation can happen much faster.
So in order to make more profit, you have to raise prices and without state intervention, you end up with prices doubling.
What Increases Prices Could Mean
Many sick and disabled people rely on a specific cocktail of drugs AND receive support with the cost.
Currently, which drugs that the NHS (in England) does and doesn’t buy is decided by The National Institute of Clinical Excellence (Nice).
Nice evaluate a drug’s suitability for the NHS primarily on effectiveness vs. value for money.
The reason why some newer drugs, which are more effective, are not available on the NHS is because of their price.
Nice often have to make tough decisions regarding new drugs that come onto the market because the NHS only has so much buying power.
However, it is exactly the buying power of the NHS that has the US all hot and bothered.
The NHS’s bulk buying power has meant cheaper prices from many American suppliers. Many in the US government (including Donald Trump) have complained about this.
If this bulk buying bargaining power was taken away, Nice would have little choice than to take some drugs off the approved list.
This could have serious consequences for many of the most vulnerable in our society.
There are many sick and disabled people who only find certain drug combinations effective, take one of those way and it could very difficult to replace.
Changes in the availability of certain drugs would hit sick and disabled people from across the spectrum very hard.
It is not just those with physical conditions.
It is those with autism and down syndrome who rely on medication to help their mood and anxiety.
Ultimately, we could cause the deaths to some of the most vulnerable in our society. Anyone who knows/cares for/works with anyone who has complex needs understands this all too well.
Many people seem not too.
We talk in this country now about moving further right to match the USA.
Healthcare in the UK is equal to everyone. You don’t have to worry about the how much it will cost. Cost is a very real concern for many living in America.
As you have seen from the videos above, people are rationing insulin, INSULIN!
Whether or not, Boris Johnson wants to put the NHS up for sale or not, changes to drug pricing will have very real consequences.
Will It Happen?
These talks have been spun as ‘exploratory’ and ‘non-binding’. However, there is few things to bear in mind:
1. The Conservatives need a USA trade deal
The tory version of Brexit relies on a trade deal with the USA. That is unarguable. It smells desperate because it is. It is the central plank of the strategy and it needs to be done QUICKLY.
2. The US will be able to make demands
The US holds all the power here and under current conditions, we will have to cede to demands that they make.
3. Listen to a former conservative PM.
The NHS is about as safe with them as hamster is with a hungry python.
In this country, we take care of everyone regardless of the complexity of their conditions.
Any changes to this system puts this at risk.
Things like changes to drug pricing may seem like a small thing. It may seem insignificant.
But fairness is all about equality, if we move the needle, if only a little then equality is under threat.
Also consider this if we want to decrease the disadvantages that people with complex needs – we need to ensure they are as healthy in body and mind as possible.
Protecting people and ensuring that EVERYONE has good quality healthcare. If we see changes to drug prices, make no mistake, this is the start of slippery slope.
There is no doubt that in the Election 2019, all parities are not paying enough attention to disability issues.
There has not been enough said about how the welfare state will be changed in the face of obvious failings. Labour have said a bit about scrapping universal credit but not enough.
The structural problems for the disability community are deep and long running. Services are disjointed and vast knowledge inequality exist.
For example, not enough working disabled people are claiming tax credits and not enough people are making the most of Access To Work.
That is to say nothing of ensuring disabled people have proper knowledge and access to the benefits, they should already being enjoying. This is particularly true of trains.
Addressing Disability Issues Should Be At The Heart of The Election
Disability is often seen and discussed as a special issue. It is not. When politicians speak about the crisis in care, pressures on the NHS or welfare reform, they are talking about disability issues.
The mainstream issues are disability issues. The difference is that disabled people are harder hit by these mainstream issues.
Lets clear something up right now, disability is something that will affect nearly everyone in their lives.
When we talk about the ageing population, the reason that is an issue is because ageing is associated with developing a disability.
This is why making things better for disabled people should be at the heart of any election debate.
Because they already are…
The Extra Costs Do Add Up
Scope has looked into the extra costs associated with being disabled and concluded that it can be as much as £550 per month.
That is a second mortgage or rent payment per month!
Where do these costs come from?
Well here are some examples:
- Running repairs to equipment such as mobility aids. A set of good quality wheelchair tires can set you back £90!
- Disabled people’s utility bills can be higher because of their need for consistent heating, power hungry aids and inaccessible transport.
However, here is the kicker as far as we are concerned, if you are disabled, it is often the case that what you NEED costs MORE.
Many of the best drugs are not available on the NHS and many private companies continue to ramp up prices.
The thing is small companies and individuals who trying to do good things.
Research and development take investment and resources. Not enough investment is coming from central government and the market isn’t interested.
The Free Market still sees this as a niche market.
There needs to be intervention in the market by the government and this should be on the election agenda.
We need to reduce the extra costs associated with being disabled. We need to tackle the price of specialist equipment. We need to offer subsidy for winter fuel payments, not just to the elderly but every disabled person who needs it.
Good Quality Equipment Costs Too Much
Wheelchairs, whether their manual or electric can cost a small fortune. A good manual wheelchair for an active user can cost anywhere from £2500 to £4500, and an electric wheelchair many thousands more.
Maintenance of these pieces of equipment can also be very costly.
The only time that I have been off work in the last few years was when my front wheel fell off.
Many of these things are out of reach for many disabled people who need them.
And that means, they disadvantaged, not by their disability but by economics.
Things need to change…
Currently, if you want to get a wheelchair, you have 3 options open to you:
- Go through the NHS, be prescribed a chair and take what they give you.
- Use the voucher scheme – the voucher scheme is where the NHS will give you a voucher to the value of what they would have spent buying a chair.
- Seek help from charities, foundations and other schemes.
The voucher scheme is postcode lottery, NHS direct option limits choice and many charities and foundations focus on children.
The bottom line is that it can be very difficult for many people to get good quality equipment, and many people just have to settle.
My Personal Experience
A few years ago, my chair kept breaking, and it costing me money and time.
I was self-employed so every time that I was off work because of chair problems, I lost money.
The problem was I’d only had my chair for 4 years and voucher scheme rules say that you have to keep your chair for 5 years. Unless your needs change…
Having looked into it, I realised that I could apply for an Access To Work grant to help with the cost.
I still needed an occupational to give a prescription.
So I thought that might be a bit of a problem. However, when I considered it, I thought, “you know what, my needs have changed.”
The nature of my work had changed, I was commuting more, going to far flung places in Yorkshire by public transport.
When I explained this to the OT during the assessment, she said that did not constitute a change in needs.
This is the crux of the issue for me.
Although my health condition had not really changed in terms of the physical nature of my Cerebral Palsy, the nature of my life had.
I was working more, travelling more and I needed a wheelchair to meet those needs.
It was a health issue. Working helped my mental health and travelling via public transport kept me physically healthy.
Eventually we came to an understanding and I got a prescription, together to with the Access To Work grant, I got a chair to fit my needs.
But it was a battle.
Here Is A Radical Idea For The Election
We need to make specialist mobility equipment cheaper and easier to access.
Because, good quality mobility equipment for children and ADULTS is one of the keys to unlocking more disabled peoples’ potential.
Having the right specialist mobility equipment can be the difference between disabled accessing their community, finding opportunities, potentially gaining employment and leading healthier lives.
At this election, we need to release more money from central government that will wipe out the inequality in the mobility market.
This means not just for manual and electric wheelchairs, but also add ons like power units and hand bike attachments.
Because sometimes, it is the add ons that make the difference.
But where does the money come from?
Well, one of the key problems here is one of production or the cost of production.
Many good innovations take a long time to come to market and too much of the R&D costs are bore through the innovators.
More money needs to be made available for development of new products in the mobility market.
Subsidises also need to be given to manufacturers on the cost of materials that need to be imported. We need to give manufacturers every advantage to lower production costs.
They are consumers themselves and they believe in lower costs.
- Give more disabled people better access to high quality mobility products including add ons.
- Put more grants out there for development of new mobility products.
- Subsidise imports on materials for production.
- Challenge the REAL inequality currently in the mobility market.
It is very common for disabled children to have mood swings. Low mood, anger and sadness are all common emotional states for disabled children to experience.
Your child’s mood is no reflection on you as a parent or their feelings toward you.
You’re still the target though and that is because you’re the closest target.
It is nothing personal and not reflective of your child’s true feelings toward you.
That being said, it is still not a great thing to go through.
What Causes Mood Swings?
For disabled children, mood swings are often linked to their conditions and this can sometimes be the case.
However with conditions such as Cerebral Palsy, although low mood and anger are common, they are not necessarily directly linked to the condition.
So what are the causes?
Well for children with physical impairments the causes are often more environmental. This is particularly true as the child gets older.
Here is a little insight into how they might be feeling.
When you are much younger and have a physical impairment, it can be tricky to notice the difference between you and other kids.
Everyone stays in, they play with toys and it is easy for physically disabled kids to feel on a level playing field.
Then things begin to change…
The child begins to get older, they see their peers become more active. Often they see kids playing on the street, they see them running, climbing, exploring and the differences become more apparent.
Frustration and anger are easy emotions to understand in this respect – your child is perhaps becoming aware for the first time that there are real differences between them and others.
What can be sometimes more difficult to understand is the sense of loss.
The old saying goes that you never miss what you never had…
That might be true in some cases but if you can see the people around you with something, then that is more difficult.
You can see the difference and you can feel it. Then it easy to wonder what you might not have in the future.
This is where the phrase, “I wish that I had not been born like this,” comes from.
A child with a physical impairment can cycle through these emotions in an instant.
Children with learning difficulties can have a slightly different experience…
Although those same emotions and situations might contribute toward mood swings, they can be more closely linked to their conditions.
For children with these conditions, their emotional states can be like a cup full of sugar. There is an endless stream of grains continually falling into the cup until it overflows.
Everything can feel too much. The lights, the smallest sounds to the way things move.
Techniques To Help
Every child is different so there will never be a one size fits all. That being said, here are some things that may help.
Sometimes, no matter what you say or do, if the child is that highly escalated, you just need to leave them alone. Create a safe space (if they don’t have one) and guide them to it.
Sometimes, if a child is highly escalated, either happy, sad or angry, they can pose a danger to theirselves or ours.
In this case, it can be good to use intense interaction, which creates a feeling of being grounded. Feeling grounded can be the first and foremost priority.
Does intense interaction work for physically impaired children?
Distraction can feel like your being a bad parent to a certain extent. But sometimes it is the only way.
What do we mean by distraction?
Distraction can be that favourite song, video or game. The conflict from a parental perspective is that you can feel like you are rewarding bad behaviour.
You are doing anything for a quiet life.
Neither of these feelings are true.
Trying To Parent During An Episode Will Never Work
Here’s the thing…
Trying to explain, change or challenge the behaviour during an episode is never a good idea. Remember the child is in a heightened state and you must wait for this to pass.
How To Approach The Aftermath
When the child deescalate, the key is what to say next and things like the tone of your voice etc.
Listen intently, find what the stimulus is and how your child might deal with it next time.
This is important for both you and your child. For you, it is about understanding the trigger points, which will make you more aware in the future.
For your child, it is about helping them understand how they are feeling, how they made you feel and what you both might do differently in the future.
Saying how you feel and ensure that your child understands that is important. Your child does care about how you feel, loves you and does want to see you upset.
Don’t Begin To Feel Anxious About Potential Future Episodes
Some episodes can be bad for you and your child. This is particularly true if something happens out in public.
However as a parent, if you begin to feel anxious about another episode happening in future, your child will pick up on this and begin to feel anxious themselves.
It may well feel tempting to avoid certain situations if for example, you associate them with certain triggers.
As I was writing this post – this came out:
Just because a child has the potential to have an episode – does not mean that they will.
And if they are struggling to control their emotions…
With good communication between the two of you, it can and will get better.
Here are some useful links:
Does having a disability automatically mean that you should settle for less out of life?
What The Numbers Say?
The statistics are perhaps why we might suggest that disabled should prepare to settle for less.
Currently, there is a 50% unemployment rate amongst those who are registered as disabled. This is compared to the national average of 3.9% (https://www.ons.gov.uk/employmentandlabourmarket/peoplenotinwork/unemployment).
Indeed, although many disabled people say that they have the same priorities as everyone else, they face significant challenges in doing so (https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/320509/building-understanding-main-report.pdf).
Disabled people are far more likely to leave school without any qualifications (19.2% compared to 6.2%).
In relationships, 3% of disabled people are thought to be in stable relationships compared to 70% of non-disabled people.
According to official gov guidelines, “A substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled.”
None of this paints a pretty picture, does it?
So should disabled people be prepared to settle for less?
Why The Numbers, Don’t Tell The Whole Story
Lets not beat around the bush, the numbers paint a pretty grim picture, don’t they?
Less likely to have qualifications, a happy relationship and a job.
What’s the point of living?
Well, the stats do not tell the whole tale.
Well clearly, not all disabled people are living in poverty, single and miserable.
So NEITHER DO YOU!
Your Wellness Is The Starting Point
We are beginning to wake up to the fact that our mental health is so very important to our wellbeing.
For many disabled people, staying mentally well is a real challenge.
From finding barriers in their communities, to inaccessible buildings and events without planning- it is too easy to become isolated.
And the big problem here is that is the first step in settling for less, if you are not going out, if you keep staring at the same 4 walls, you can convince yourself that is all you deserve.
So how do you combat isolation?
Getting Out And About
The key thing to do combat this feeling of isolation and by extension improve your mental health, is to get out and about.
And while getting out and about can seem tricky, there are things that you can do to make things easier.
1. Find events that match your interests
This might sound obvious but the point is important, and that is because your interests are important to you. That is why, finding people who share your interest can be great. It is a chance to show your passion and speak with confidence. It also gives you a chance to see that other people think and feel the same as you do.
2. Do your research
Everything is scary.
In your head that little devil is going, “what if?”
Combating doubt and challenging your anxiety means taking the devil head on. Planning is the way to do this.
If you are worried about getting into venue, call them and chat to the staff. That way, you can let them know you are coming and they can prepare the lift/ramp or anything else.
Do your research and break down the fear.
Get Into A Routine
Once you break down the fear, you should aim to get into a routine. If you find something that you enjoy, make into a regular thing.
Whether it is going to an activity group or even just down the pub, do it consistently. It will build your confidence and slowly you will branch out into new things.
For more tips about getting out and about – click here.
How Does This All Help You Not Settle For Less?
It is all about making those small steps. Once you start becoming more engaged in your community, you will see opportunities open up to you and this is where you need to be alert.
Things like volunteering, training and gaining skills can all happen if you feel confident to grasp the nettle.
You need to be mentally ready and confident to see and seize the opportunities that will come your way.
But if you a break down your fears and consistently challenging your boundaries, new opportunities won’t seem so scary.
From there it is all about taking those small steps further down the road and seeking further opportunities.
A Little Bit of Knowledge Can Really Help
The other big thing is to know your rights and know what you are entitled to. Things like knowing how to board a train and how to get the most out of train travel, can make all the difference.
Because by exercising your rights, you have better experience and you feel more confident.
Also by properly exercising your rights, you will begin to expect more and will feel more confident about asking for it.
None of It Should Cost The Earth
Money, it makes the world go round right?
And the problem is, it costs more if you are disabled.
So money can be a big reason why disabled people feel like they should settle for less.
Hell, many have less to begin with.
But by exercising your rights, you can get a better outcome and if you ensure your getting everything your entitled to, you can feel the difference.
That means that if your working (even part time), you’re getting Access to Work and Tax Credits.
Could the UK give you a better deal?
Of course they could.
With what we have now, you CAN feel better, you can get more and you should not settle for less.
Make The Change Now
Here are some steps to get started:
- Think about what you are passionate about.
- Explore how you might service those passions.
- Follow that.
- Research the hell out of everything.
- Fill yourself with confidence.
- Take every opportunity.
- Gain skills, knowledge and go forwards.
- Expect more.
- Want more.
- Never settle for less.
Being a disabled teenager is hard. You have all the usual worries about fitting in, making friends and worrying about the future, but you times the severity of those feelings by about a 1000%.
Everything is so bloody difficult and a lot of the time, there is no road map.
That is why it is easy to turn to your parents for support.
And you should do that.
Your parents have been there from the start and they will know better than most what you have been through.
The bond been a parent and their disabled child will always be strong and you will always feel immense gratitude for everything that they have done/do.
Here’s the problem though…
You’re a disabled teenager now, not a child anymore and that means both you and your parents need to adapt.
It Is Time To Start Talking
As a disabled teenager, at some point, you will begin to think, “my parents aren’t listening.”
And this may well be true…
There will be new things that you want to try and things that your friends are doing, which you are not.
Here is the thing though, your parents probably haven’t caught up to the fact that you indeed a teenager.
So to them, you might still be a kid.
That’s normal for parents to think that way about their teenagers though, right?
Well yes it is.
But in the case of the average disabled teenager, your parents probably have a whole list of hang ups that they’ve never dared share with you.
That is why it is time to start talking.
So how do you go about starting those conversations?
Breaking Things Down
Starting those conversations with your parents or your disabled teenager is often a process of breaking things down.
This is because the big things are often the things that you think about first.
How are you/they going to find a job?
How they/you going to have relationship?
You both have to remember that these are end points and that you have to smaller.
Do you want to go out for a drink for example?
If that’s goal, sit down and talk about things like:
- How are you going to get there?
- How are going to get into the venue?
- What about going to the toilet?
Answering these questions can help set both of your minds at rest and make things seem more possible.
For some ideas about answering these questions, give this a read: https://ethosdisability.com/blog/wheelchairs/top-tips-for-wheelchair-pub-crawls-version-2/
Why Talking Might Not Work?
Those conversations might not work for any number of reasons.
But sometimes for the average disabled teenager, it can be for one very important reason for this.
Your parents can only see your limitations and not your potential.
Your parents are so used to doing things for you, and filling in what they see as those gaps that they cannot see a way you can.
As we have previously discussed, it is often the case that learning new things is just a process of breaking things down.
It might simply be that you just need to learn something new.
That is why, as hard as it might be to do, you need to stop listening to your parents.
It is time to start thinking about what YOU really want and going after it. The world is now full of inspiring disabled people who succeed in many walks of life.
Here are a few examples:
Emily Yates – Emily is an award winning travel writer who has been and continues to hop all around the globe – https://www.emilyroseyates.co.uk/
Aaron ‘Wheelz’ Fotheringham – Aaron is extreme wheelchair athlete who has appeared in Nitro Circus.
Liam Bairstow – Liam is better known as Alex from Coronation Street. https://www.youtube.com/watch?v=SR581PpKueU
Be Brave, Be Bold
It is easy to sit here and say, “be brave, be bold.
But you have to be.
Challenge yourself and be daring, despite what your parents say and push those boundaries.
What seems impossible is often just a matter of proper planning and forethought.
Take getting on a plane for example..
Getting on a plane as a disabled passenger can be simpler than for average joe.
Because, you can get someone to help you through the airport including, pushing you, carrying bags and guiding you the right way.
Also, YOU DO NOT NEED TO BOOK IN ADVANCE TO TRAVEL.
For more tips, see our guide for solo travellers.
So The Next Time…
So the next time that you hear, “no you can’t do that.”
“I don’t think that is such a good idea.”
It is time to throw the challenge down and realise that your parents are not always right.