This is part four of my series on Personal (care) Budgets. Parts one, two and three can be found here and it’s best to read those first!
What happens when I get the funds?
You can hold the funds yourself – as long as you can open a separate bank account. Online banking is great for this, as you can open one within minutes.
This does mean you will be responsible for payroll, and checking enough is left to cover holidays for your Personal Assistant, although there are DVD-ROMS that can help with this.
You will need to keep receipts for anything agreed, and show your Social Worker when they request them.
The other route is using a Payroll service. Often this is run by a charity or organisation linked to Social Services, and they’ll look after your funds, and pay your Personal Assistant.
You will still be responsible for the budget, and have to make sure you are requesting the right money, as any overpayments will be down to you. However they will provide the payslips, and make sure your PA gets paid, so it’s easier, and they can answer questions too.
My Support Plan has been agreed, now what?
If it’s agreed you can hire a Personal Assistant, there is usually another organisation that will step in at this point to help you with this. I found this very helpful, although I still did much of it myself.
Here were the next steps I took:
- Wrote a Job Description
- Advertised the Job
- Decided how many applicants I wanted to interview and contacted them
- Held the interviews
- Informed those who didn’t get the job, and offered the job to the one who did!
- Contacted references
- Put the contract together
- Sent off for a DBS (which replaced the CRB)
- Got Employers insurance
- Added my PA to my Motability Insurance
- Got a start date in place
The Job Description
This usually contains a line of information about yourself, perhaps your age and what your disability is, or what your specific issue is.
Some examples could be:
- I am a 39 year old man who has a chronic condition which affects my mobility and wellbeing. He is looking for a kind PA who can create a routine.
- A 50 year old lady with ME, who is a part-time wheelchair user, who would like to get out into the community more. She would like someone caring, and patient to help her.
- I am an 18 year old lady who cannot walk, or talk, and requires 24/hour support.
The next is listing the jobs you will expect them to do. It isn’t an exhaustive list, but it is helpful to give examples because I believe the first step to finding a good fit is making sure you’re on the same page. The PA I chose had carefully read this list, and pointed out where we had similar interests, and what she’d enjoy. It also clearly fitted around her own life, which gives you security they’re not going to leave you straight away.
One lady I interviewed asked beforehand whether I could make the hours full-time. This concerned me, because it made me feel she’d be still looking for a full time job. I still interviewed her, and didn’t really ‘click’ with her, but when I emailed her to say she hadn’t got the job, she responded to say she’d been offered a full time job elsewhere. So I was right to have had those concerns.
When it’s a part-time position, you need to know they’re happy with those hours, or have another opportunity they could fit around you.
Make sure to mention any pets you have. It’s no good having a PA who is allergic, dislikes or is scared of the pets you have.
Mention any hobbies, particularly if the PA will have to get involved. I made sure to write they would need to support me to go swimming, because again I knew I would want to go regularly, and if they hated swimming, or couldn’t swim, it wouldn’t be a good fit.
I know of someone else who hired a PA, and didn’t mention that her hobby was heavy metal concerts. The PA then refused to go – which meant she had to miss out.
Example of Job Description:
Job title: Usually ‘Personal Assistant (care). You can also state male/female here if your PA will be doing personal care and you have a preference.
Salary: the amount you will pay
Hours per week: Also state here if there is any flexibility so you don’t put anyone off who could do it if something slightly shifted. If it’s set in stone though, that’s fine!
Location: the town you live in, and maybe the first part of your post code. For safety reasons you don’t need to be more specific.
Description: This will be the line about you as discussed previously.
- To support me to access the community, e.g. shopping, visiting friends, medical appointments, weekly heavy metal concerts.
- You will need a full clean driving licence as you will be expected to drive my car.
- You may be required to assist with some light gardening.
- You will be required to do some household chores, e.g. laundry, bed changing, ironing and hoovering.
- You will need to push me in my manual wheelchair, and lift it in and out of the car.
- To support me with my personal care, including washing, dressing, etc.
- You can also state if you don’t allow smoking by adding: “The employer operates a no smoking policy.”
Finally, you don’t want anyone nit-picking if you ask them to do something you forgot to put on the list, so a good catch- all sentence is:
“The above is not an exhaustive list of duties and you may be requested to undertake other tasks as and when required commensurate with the role of a Personal Assistant (PA).”
Advertising your job
The organisation helping me automatically put the advert on the JobCentre website, and their own.
When applicants slowed, I also added the application to Gumtree, and Indeed – both free sites. You could also advertise it on Social Media sites, but please do be careful of your privacy, and ask a friend to post it rather than yourself.
How to pick the candidates?
Obviously there is no set rules here. The application form the organisation I worked with used was pretty short, and while you don’t expect applicants to have to write essays, you do need something to go on.
There were two questions that allowed them to expand, and they were ‘hobbies and interests’ and ‘Anything else you’d like to tell us’ type questions.
I tried to make sure they’d actually read my application and met the basic criteria. (I had people apply who couldn’t drive, and this was vital for me.) I also wanted someone that could help with paperwork, and so looked for a good level of spelling/grammar. Everyone makes typos, but I would expect someone to proof read the shortest application in the world!
I also looked for people whose hobbies matched my own. However, it’s really hard to tell what people are like on paper. They can write a great application form, but be awful in person, and of course vice versa.
The next part will cover the interview process, and inducting your new Personal Assistant.
This is a series on Personal Budgets, accessed through Social Services. Please read parts one and two here first.
The creation of your support plan and who can help
This should be the first stage where another organisation will get involved. You are perfectly entitled to write your support plan by yourself, but in each area there is usually another organisation or charity that will help you. They should help you through every step of this process, but some are better than others.
Before I started this process I was warned that they will often want you to be an “easy” client i.e. write a Support Plan that goes along with what the Social Worker has agreed, submit it and they get paid. Unfortunately I was not one of those easy clients, because I didn’t just want to go along with just the PA hours, but make a case for some massage treatment. I’d been using my savings to pay for them, which were drying up, and they’re pretty much all that keeps me going.
As soon as I mentioned this, my ‘support’ dried up pretty quickly. I was told a few times it wasn’t possible, then I didn’t hear from her again – even when I submitted my final Support Plan I wrote myself for her thoughts. So it took me weeks to put my plan together, when with some help it could have been much quicker.
However, this will be down to who you get, and I’m sure some organisations have the best interest of the client in mind. if your Social Worker is backing you anyway, it should all be quite simple.
What will my Support Plan look like?
The Support Plan sets out all the help you need. I was told that this is the only document that the social worker sends through to have your budget approved, and so it is important that you explain who you are as a person.
Generally you’ll start off by talking about interests and hobbies, what your disability is and how it impacts you. You might talk about what’s important to you as a person, and then each of the problem areas highlighted in your Review.
Your eligible needs will be listed, for example: accessing the community, everyday living tasks, your physical health, your mental health, moving around, and relationships and under each of these headings you need to write what support you like to be given to help you meet each of those needs.
Under every day tasks, you may say a PA would enable you to have help to get up and dressed each day. Or you may say under accessing the community that a PA could drive you to your friends, or to a class each week. You don’t need to be specific and list every task they’ll do, just give a vague idea, and the time you’d like for it. You can write more than one task under each of the categories.
How do the costings work?
You need to convert each of what you’ve asked for into a financial payment, that adds up to the amount you’ve been allocated.
In my area of PA our gets allocated £11.28. (This includes holidays and all the other things you need to think about as an employer, this is not the amount that they get paid to them directly.) Using this you can then work out how many hours that you could get each week, and then each day.
This can be broken down further i.e. I asked for a certain amount of hours my care needs, certain amount of hours for getting out community, a segment of hours for going to appointments, etc. You don’t need to justify what you do within those hours, by giving specific tasks and timings. However if something takes you a particularly long time, such as bathing or getting dressed, you could use this to justify additional time.
Don’t forget about contingencies as well – what happens if your informal carer becomes ill? What happens if you become severely ill and need further help? You need to build all of this into your budget, by allowing for additional hours for a certain amount of weeks for various scenarios.
You also get given in your first year £200 extra. This covers a DBS check (formerly known as a CRB check), and employer liability insurance.
What can happen when I ask for the help I need?
Obviously everyone has different experiences, but something I’ve found is there isn’t much transparency in the system. At all. There don’t seem to be clear documents setting out what is and isn’t reasonable, and if you ask for one you get told everyone is different and they assess accordingly.
I kept being told certain kinds of therapies/activities I was asking for wouldn’t be covered in the budget, and they didn’t have that kind of money anymore. However, that’s not how a budget works. You’re given an amount before you can lay out how you want to spend it, so I wasn’t asking for any more than I’d already been told I could work up to.
And, if your budget doesn’t meet your needs – the budget isn’t right! So this is where it gets a bit complex, as sometimes the Social Worker simply tells you “no” without explaining how to go about challenging their answers.
So, how do you get what you’ve asked for?
The most powerful thing you can do is provide evidence upfront. I didn’t do it for everything I’d asked for, because I could clearly see where my Social Worker was supporting me (a PA, contingency plan), and where she wasn’t (massage therapy.)
You can go about this two ways. Write and submit your support plan. If they reject it, you can then submit evidence and it goes above your Social Worker to a panel, who will decide.
I could see quite clearly it was going to be rejected, so I gathered all my evidence upfront.
What does the evidence need to say, and who should write it?
I will continue using the example of the massage therapy, as that’s what my challenge was based on – but this could be on a gym membership, an art class, gardening equipment, additional PA hours, or anything.
Remember how I explained how they broke down everything into five categories? Again, these are:
- Access to the community
- Everyday tasks
- Risk and safety
- Support and advocacy
They also generally add on physical and mental health to these for the Support Plan. These categories are what you should target when writing your evidence.
Take massage therapy – the condition I have causes horrendous muscle tightness and spasms. My evidence could have said it is quite clearly a health need to have this treatment, as massage is the only treatment that helps this part of my condition. However Social Services would have rejected this argument on the basis of it being a health need, and therefore the responsibility is with the NHS to fund it. (It doesn’t matter if the NHS won’t fund it, the evidence would still have put it into that category.)
Social Services puts all the importance onto the five categories above, and so your evidence always has to work within them to explain how it will impact your life if you didn’t have whatever it is you are asking for.
My evidence focused on the fact that without massage my pain levels would be so high I’d be stuck in bed for weeks at a time, having to significantly increase my pain medications, etc and as a result I wouldn’t be able to access the community. That’s the significant part.
I also argued that as my pain levels increased, my ability to function which decrease and as a result would need significantly more help to carry out everyday tasks.
You have to make similar arguments for every single category, (or at least as many as you can). You can also make more than one point for each category – as long as they’re all true of course!
The more evidence you can provide, the better. In my case my GP wrote a similar letter from their point of view, and my massage therapist also wrote a very detailed letter.
Think outside the box here, while obviously letters from consultants, GPs, physiotherapists and other medical professionals are great, letters from family members, close friends and, neighbours etc are just as important, if somebody has witnessed what a difference a specific activity or piece of equipment could make your life – just have them summarise that in their own words.
It’s also really important to write one from your own point of view. You can either talk about how vital it is to you to continue with an activity, or what a difference it would make to start doing something new. Think about key aspects such as confidence, self-esteem, quality of life, well-being and respite.
I can’t guarantee that this approach will work for everyone, but the better quality your evidence is, the more chance you have to keep fighting and appealing.
Remember you can appeal your Social Workers decision.
What if I get really overwhelmed by the whole process?
If you’re finding yourself getting stressed and upset trying to get a Personal Budget, or your Social Work is being particularly obstructive – it might be a good idea to get an independent advocate. Each area should have an organisation that receives funds to advocate for specific groups – such as people with disabilities. You could also approach charities such as MIND, if that’s appropriate for you, your Care Advisor attached to your GP surgery, Welfare Rights linked to your council, Scope or DIAL.
Every area will have different organisations, and may not have all the ones listed above. Google the name of your county followed by ‘advocacy’ or phone CAB and ask who provides advocacy if you’re getting stuck.
Try to do this is as soon as you can, as often there is a wait. Often the Advocate won’t do it for you, but will come to meetings with you, suggest the next steps, or even talk to your Social Worker.
I had one, who was very good – and after a phone call to my Social Worker things suddenly became much easier. So it’s worth having one if you can.
Part four will cover where the funds will go, writing your job description for your Personal Assistant and advertising the job.
Continue with part four here.
This is the second part of my series on Personal Budgets. Please start with part one here.How does the assessment work?
When you eventually get assigned a social worker they will visit you to carry out an assessment. Don’t worry too much about this, it’s much more informal and relaxed than a benefits assessment, or something like that. They should be trying to meet your needs as best they can, and you have every right to have a say in this, and correct anything they get wrong.
The assessment isn’t usually a very specific question and answer session, but more of a chat that then gets converted to the information they need. However, if you’ve already thought carefully beforehand about the areas you’d like help with, you could write it up and give it to them, or simply make notes of specific points to say. It’s really up to you, and your social worker should find a way that makes you feel comfortable.
After this visit, the Social Worker will go and input all the information into their system. This is called the resource allocation system (RAS). A lot of people think you’d ask for you what you need first, and this information would get converted into an amount, but this isn’t how it’s done. It’s based on your circumstances and the level of help you require.
In some ways it’s a bit like a hidden points system, as the higher you score, the larger your budget becomes.
The way the review is set up is quite onerous, as not everyone’s situation always fits into the exact questions that they ask, but the social worker has no choice but to try and mould you to fit this form.
What does the review form look at?
It will begin with your details, your disability and how it affects you, your current care situation and your carer, anyone you care for (i.e. children), and your views/aspirations.
It then breaks the assessment down into certain criteria that they look at, which includes:
The Social Work has to answer the questions relating to each of these areas, and assess how high your need is.
I will give you an example of one of these, just so you get an idea. Under ‘Everyday Tasks’ one of the questions is on food and drink.
The options include:
- I am able to feed myself
- I need some help to feed myself (.e.g. cutting up food).
- I need to be encouraged or helped to eat.
- I am unable to feed myself without support and this needs to be done for me or with me.
The Social Worker has to select one, but if you don’t agree, you can ask for it to be changed and explain why. If at the end your budget doesn’t quite meet your needs, this is a really good place to carefully review and make sure each of the options fits your situation. Sometimes we make snap judgements about ourselves, such as, “Well of course I don’t need prompting to eat!” But sometimes if you think about it, sometimes this might apply when you’re in a lot of pain, or exhausted and don’t feel like eating even if you’re hungry. So maybe sometimes encouragement or help does happen.
The second part of the review form is looking at banding your needs, based on certain activities you would like to do. For example if you stated during your assessment that you cannot drive, the Social Worker will need to think about how this will impact you in each of the categories above. So taking the driving example, they may decide that not being able to drive could put you at risk of not accessing the community, and it would impact your relationships as you could become isolated. Each of these areas of concern will be assessed using the fair access to care eligibility criteria, and put into one of four bands: critical, substantial, moderate and low. The council has a duty to address any needs that are either critical or substantial. So carrying on with the driving example, they could say that they think you not being able to drive would very likely end up with you being isolated, so they may rate that as a substantial need that has to be addressed.
When you then get your budget, you must be able to ‘solve’ every issue that’s either critical or substantial. So the driving issue could be solved by hiring a Personal Assistant that can drive for you. However, this comes later in your Support Plan.
What you will need after the assessment has been carried out is a copy of your Review Notes, and the amount of your budget. Make sure at this point you challenge anything that’s not right about your Review Notes.
Sometimes your Social Worker will tell you your notes are now locked, and they can’t change it. If this is the case – tell them you need a review meeting. (It sounds ridiculous to have a review meeting before anything has happened, but this is down to the old-fashioned RAS system).
Once you’re happy with your Review Notes, and your budget, this is the point where you really get involved, and can start carving out the solutions to your problems in your support plan.
What doesn’t the assessment include?
Something I found off when I was assessed is that cleaning time isn’t included in the budget, nor things like help with pets or gardening.
So they’ll help you get out of bed, get washed and dressed and expect you to sit in squalor. While your dog starves in the corner. Lovely!
The reality is that once you’ve employed a Personal Assistant, you can ask them to do anything (within reason) and you’ll notice most adverts do mention cleaning of some kind. If Social Services give you time for something, you don’t have to use it for that task. You can shift tasks and timings around so everything you need gets covered.
It’s worth taking to your PA about this during the interviews, and checking they’re happy to do the cleaning, walk your dog or pull up some weeds. It’s all about being upfront to make sure you’re all on the same page.
At some point after your assessment, you will go through a means-test, usually carried out by your local County Council. There will be one of three outcomes after this test – you will have to pay everything, you’ll contribute towards the budget, or you’ll pay nothing. Your first £6000 worth of savings aren’t counted. There are also some other exceptions that also don’t count – such as a benefits back payment, or injury compensations.
Just because you receive income-related benefits, doesn’t mean you will pass the means-test. However, out-goings are taken into account – particularly those related to your disability.
To prepare obtain receipts for anything disability related. Do you have a cleaner, or gardener? Other things that count are if you pay for any therapies such as massage, counselling, osteopathy, or chiropody for your feet (or anything similar, these are just some examples!)
There are other categories as well such as if you buy anything medical that’s not on prescription – cream, joint braces/tubi-grip, etc. You also get an allowance if you need to wash clothes more than normal.
All of this information will be inputted into an income/out-goings sheet, and will calculate what you will have to contribute, if anything.
The next post will talk about creating your Support Plan, and how you may need to get past the ‘computer says no’ attitude from Social Services.
Carry on with part three.
About a week ago I finally had my Personal Budget sent from my county council to my elected payroll service. It was a long, stressful road – mostly because I had no idea what I was doing, and couldn’t wrap my head around the lack of transparency in the system.
I’m not an expert, but I wanted to share what I learned on the way, and to encourage more people to apply for a budget. Once it’s in place, it could really make a difference to your life.
This will cover the basics of getting a budget. Next week I will move onto how to find a Personal Assistant, and the basics of becoming an employer.
How do I get the help I need?
A few years ago the new buzzword became ‘Personalisation’ in social care. The idea is that people with a disability should be put in control of any help they are assessed as needing by Social Services. For example if someone is assessed as needing care, Social Services could link that person up to an agency. They won’t know who is coming each day, and their visits may be fitted in around other clients – rather than when is right for them. Instead a budget would allow the person to be given the ability to employ someone directly, therefore having chosen and vetted the person caring for them, and that person then working to their specific routine. The budget then gives choice and control to the person needing care.
The idea behind it is very simple, although getting it all in place can be a little more complicated. However, it’s still a great improvement, and once you’re fully informed on how the system works, it can make a great difference to your life.
The one negative that I will say up front, is that the idea behind them is that once your budget has been assessed, you can spend it on whatever helps you to meet your assessed needs. But this ethos seems to have changed though (of course along with the many other welfare cuts) to “the smaller we can get your budget, the better!” However there can be ways around this to try and stop that happening.
Eligibility for Personal Budgets
People with disabilities are the target for the budgets (although they do exist for carers and older people who may not see themselves as disabled), and they are usually for people who need some kind of care – although not always. The Fair Access to Care Services (FACS) is the guide that councils have to follow when assessing your needs. There are four defined eligibility bands – critical, substantial, moderate and low. It’s a good idea to read the guide to see how they break this down. All councils have to meet critical and substantial needs. Some also meet moderate, and others meet all four – but this will depend on the size of the council’s overall budget, and the need in their area. I will explain later on exactly what they’re assessing with these bands.
How do I get a Personal Budget?
In summary here are the steps that lead to a personal budget:
1) Call Social Services
You can self-refer. Find your local office by searching ‘Adult Social Care Direct’ followed by the county you live. Ask for an assessment for a Personal Budget.
2) Have a telephone assessment
They aren’t that in-depth, you most likely just need to answer a few questions about what you’d like to achieve with a budget. You don’t need to go into detail here at all, I think it’s just to give them an idea. However, it is important to mention any particular difficulties in your circumstances i.e. any issues with your current informal carer, if your health has taken a dramatic downturn, you’ve been injured, or any impending major life changes, such as a pregnancy, etc. They then use this information to prioritise cases.
3) Wait a really long time
The next step is being assigned to a Social Worker, and this is usually where there is a long waiting list. I think I waited about six months, but some areas will be shorter, others longer.
4) Have an assessment by a Social Worker
This is where things start to happen. A social worker will visit you and find out all about you, and the help you’d like. They use this information to generate your Personal Budget amount.
5) Have a means-test to see how much you will have to contribute to your budget
You may not have to pay anything, you may have to pay towards your budget, or you may have to pay for everything.
6) Create your Support Plan
Once you know how much your total budget is, you need to work out how you’d like to spend it. This document then gets submitted back to your Social Worker for approval.
7) Argue back and forth if they won’t give you what you need
This is the part where you need to make your case about why you’re asking for what you are.
8) They agree it, and the funds get transferred
There are a few options of how the money is managed. You can do it yourself, or another organisation can do it for you.
Spend it as you set out in your budget.
What kind of help can a personal budget provide?
If you have a look at the information online about personal budget it will tell you it can provide help with all kinds of interesting and helpful things. For example here is what the charity Mind say a personal budget can pay for:
- getting help with cooking, shopping and cleaning
- having short breaks or a holiday
- leisure activities, e.g. an art class or a walking group
- having driving lessons
- buying specialist or computer equipment to make life easier
- buying membership of a gym or sports club
- finding a job or learning new skills
- having an aromatherapy massage or other alternative therapy
That all sounds really great doesn’t it? You start thinking about respite breaks, being able to swim weekly when you haven’t been able to afford it before and so on. And it’s true when the budgets first started these are the kind of budgets people were getting.
However, as you can imagine budgets are now being squeezed. It’s not that you absolutely cannot get any of the these things provided, it’s just a lot harder.
You definitely need to be able to fight for it, and have the right support because it’s most likely your social worker will tell you it’s impossible to get this kind of help. They will have been told by their managers to keep budgets as low as possible, and often won’t give you the information you need to be able to apply for that kind of assistance.
Most of the support they will want to offer you will be around having a personal assistant if that’s something suitable for your disability and needs. They may still try to get the hours as low as possible in many cases, so you need to be on the ball and be able to justify your needs.
I just want to make it clear here I’m not necessarily blaming the social workers – I’m sure there are a lot of social workers out there who are still fighting for the best interests of the client, however when they’re getting edicts from above that budgets must be as small as possible and they’ll be queried as to why they’re not, it must be pretty tough on them. That’s why it’s really important that you know your rights so that you know how to get around the information that you’re being told.
What is a personal assistant?
A personal assistant is the new fancy way of saying carer – except carer can sometimes have a negative connotation of being “looked after”. It also takes into account that your PA will do a lot more than simply care for you. There is such a range of disabilities and needs out there, but not everyone needs a PA to get undressed and feed them for example, although of course some do. You may be perfectly capable of doing that yourself, that need someone to drive you to appointments, or support you with your paperwork because you get overwhelmed, or to come to activity classes with you because you need a little bit of extra help – there are so many things a personal assistant can do.
What if I already have a carer?
This is completely your decision, but sometimes I find in some situations a carer has become a carer out of necessity, rather than it being completely right for either your needs, or their lives. Over the last two years my mum has become my informal carer but she still works. This means that she has to take time off work because of my appointments, and that her availability to help me is quite limited. I also feel she doesn’t really get a rest from work – as all her annual leave is spent on my appointments, and doing things I need to do, rather than on fun activities. So it doesn’t quite work as well as it could.
I think a lot of people have relatives that have become their carers, such as their parents, spouses or children. And they may feel this is their only choice, but it’s not. You are entitled to have a relationship with your parent, spouse or child that remains as it should be – without the added extra stress of them being a carer also, unless you are both perfectly happy with this arrangement. In which case – carry on! But the important thing is that Social Services cannot argue that as they are currently caring for you, this must continue.
Normally a Personal Budget will not allow you to pay a close relative – particularly one you’re living with to care for you. There are some exceptions though, like where it would cause extreme distress for anyone else to do it. It has to be a pretty big reason, but it’s possible. So talk to your Social Worker if you think this may apply in your case.
Part Two is available here. It will cover:
How will the assessment work?
What areas of your life will the review look at?
How does the means-test work, and how should I prepare?
My mum is currently having physiotherapy after an operation on her shoulder. She got chatting to her physiotherapist, and my condition came up – Ehlers-Danlos Syndrome. It turned out that the physiotherapist has a great interest in the condition, has a few patients with it, and leads the in-house training to the other physiotherapists. She invited me to come along to give a talk to them during that session.
So that’s how I ended up pretty much taking over the whole training session myself.
The idea originally was that the physiotherapist would cover the medical and exercise aspects, and I would cover the daily living aspects – but my notes grew longer and longer. This was my chance to help make things better for people with the condition, and there was so much to say!
When you speak to someone with EDS, or other complex chronic conditions you’ll often find that they have had a bad history with a physiotherapist at least once in their past, and sometimes repeatedly. (Here are just two posts talking about previous experiences here and here.) But sometimes it’s not their fault – we are well aware they have to see a lot of people in not a lot of time, and are generally encouraged to discharge as soon as possible. Many report being asked to pick one joint that is the worst, being handed a couple of exercise sheets and that being the extent of their treatment. Others, including myself, saw physiotherapists for years without them ever mentioning the hypermobility – that could have led me to that crucial diagnosis.
While I had a lot I want to say myself, I wanted to let other people with the condition have a say as well.
So I went on to a Facebook group that has over 5000 people with the condition on and asked them what they would like to say to physiotherapists if they could. From that, adding in information about our symptoms, our daily lives, the different types and so on, I built up a talk.
The way their training sessions work is that they have an hour built into the day, and all the physiotherapists who don’t have a patient at that time, come along. She expected around 4 to 5 to attend – but when I arrived I was faced with a very small office filled with around 10 physiotherapists. It wasn’t so long ago I would have immediately turned my chair around, found a toilet and locked myself in it until they all went away, but I’m very lucky that over the past few years I’ve been chairing a meeting group and have greatly gained confidence in public speaking – to a certain extent, I’m not saying I’d be happy to give a speech to a large amount of people, let’s not get silly here.
It also helped I was talking about something I was passionate about – the education of front-line medical professionals.
A few of the topics I spoke about included the difference between Ehlers-Danlos Syndrome, Hypermobility Syndrome and Benign Joint Hypermobility Syndrome. A general overview of how many medical professionals and consultants someone with EDS sees before they get a diagnosis, and the fact that it takes 30% of patients over 10 years to receive a diagnosis of EDS and over 20 years to 50% of patients. I also emphasised the fact that 95% of patients remain undiagnosed or misdiagnosed. I also spoke about which conditions are most commonly diagnosed instead of the correct or underlying cause of EDS, and also gave some tips in what not to do when treating or examining someone with the condition. I particularly emphasised that the condition is extremely variable – and that if we can’t come to a session or a few sessions it doesn’t mean we are uninterested, or lazy – just that it’s not what we are able to do at that moment. And it also depends on which areas of our body are a particular problem at the time, one week an exercise might be fine, but the next week dislocate a joint.
I emphasised to them that the way forward is for more frontline professionals to have an understanding of EDS – particularly GPs and physiotherapists who are often the ones patients see first.
No one expects everyone at those two groups to have full knowledge of the condition, when there are so many conditions out there – but it would be brilliant if when presented with a patient with long-term chronic pain, and hypermobility they referred them onto a specialist. Other things that would help patients is long term care, not just the six sessions that are offered on the NHS before being discharged, and the same thing with hydrotherapy, which should be an on-going treatment, particularly as it can be one of the only treatments that is effective for people with EDS.
They seemed interested, engaged with what I was saying, asked questions, and even asked advice on past cases and whether their care was appropriate (whilst maintaining confidentiality of course). One physiotherapist said that in general physiotherapists like regimented care, i.e. they can pick up a file for a patient that says they are currently doing six reps of exercise 1, and 10 of exercise 2, and so on. Any other physiotherapist could then pick up that folder and continue their care if needed. However when he had a previous patient with EDS he found that it was completely impossible to treat him in this way. One week he could do a decent amount, but the next all he could do is lay on a table whilst the physio mobilised his joints for him. Other sessions he couldn’t even make it to the hospital at all. He said that he had to be really flexible with the patient – which emphasised what I was saying.
I also told them about my previous physiotherapy sessions, where I spent the first session explaining how I might not be able to make every session, I was having a lot of flare ups and spending a lot more time in bed unable to do anything and she seemed really understanding. And then it happened, I had to cancel a session and it turned into a few weeks as it was a really bad flare up, and I called to update her and they said just call back when you’re ready, which I did, only to find that she had discharged me.
I was too exhausted to go back to the beginning, so just went without.
Another physio suggested that on occasions like that it would be helpful for the physiotherapist to visit me at home, but of course I’ve never been offered anything like that. Also when talking about ongoing hydrotherapy, which I have been told previously is impossible due to the waiting list – they informed me they do have a few rolling programmes, including one for paediatrics with hypermobility, and another for people with Rheumatoid Arthritis – so it is possible. I’ve now got the name of the manager, and I’m going to contact her and explain how important it is for this to be put into place – particularly when a lot of us are being told that the ‘land based programmes’, as they call them, are inappropriate for us.
Hydrotherapy, for a lot of people with EDS is very good because the water supports the joints, so dislocations are less, the warmth helps with the spasming muscles and we generally find we can do a lot more in the water. Of course this doesn’t apply to everyone, particularly if they have bad POTs alongside, as the heat can cause havoc with feeling faint and dizzy.
In summary I really enjoyed giving this talk, and have been invited back in July.
Patients talking to medical professionals is the way forward t0 them gaining an understanding to the reality of life with a complex condition, without reading a little paragraph in a textbook.
So I commend the physiotherapist that setting this up, and I hope more will do so in the future.
Have you ever has an opportunity to talk to medical staff in this way? What would you have said?
It’s the feeling of being completely invisible.
From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!”
It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world.
38% of people believe disabled people are a burden on society.
But these attitudes spread quickly, and seep into all parts of life. That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.” Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.”
It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible. Shops, facilities, services and buildings still haven’t complied with the law, and continue to get away with it.
47% of disabled people currently work compared to 77 % of non-disabled people.
I’m a wheelchair user, along with 1.2 million other people in the UK. Last week I had an appointment at my new doctor’s surgery. Their website proudly states the following on the front page: “We work from a purpose-built surgery with good parking facilities at the front, with wheelchair access.” Yet I was faced with three problems before I even reached the treatment room. The front door was really heavy, and swung back to smack my chair while trying to get in. The receptionist, who had watched this struggle, was behind a high desk which meant I had to call up to her. Luckily I was just telling her I’d arrived, but had I wanted to have a conversation privately, it wouldn’t have been possible. The treatment room is at the end of a long corridor, and just before her room was another door propped open. As I got there, the door suddenly swung closed onto me. I tried to open it and push forward, but the doorframe was so narrow – I couldn’t get through.
More than 1 in 4 disabled people say they frequently do not have choice, or control over their daily lives.
My doctor eventually heard the bangs and came out, and it turned out the door had an automatic opener – which for some reason had suddenly failed. That alone was annoying, but I then had to dismantle my wheelchair part by part, with my GP watching me. I have never had an issue getting my wheelchair through a standard width door before. I then had a very awkward drive into her room, trying to hold everything, control the chair and navigate the packed room.
I was mortified. I thought, ‘She’ll think I’m a bad driver!’
Only later did I think – that was their fault. Why should I now be afraid to go to see my GP as I can’t face it happening again?
This happens time and time again. I can’t get into the vast majority of the shops in the town I live in. Those I can have difficulties – narrow sections, steps, are too packed, put displays in the aisles, don’t have a lift, and so on.
65% of people have admitted they avoid disabled people because they don’t know how to act around them.
Over the past few years it hasn’t been possible to pick up a newspaper without finding a story on the welfare state within. Quite often these stories have focused in on people with disabilities, painting a picture that many are claiming fraudulently. How often do you see headlines such as ‘Disability benefits cheat caught out when she was spotted walking the Great Wall of China’ from The Express, or ‘Benefit cheat who claimed £21,000 in disability benefits while working as a boxing instructor spared jail’ on the Mail Online. Or vague headlines that cast doubt on the system itself, such as another by the Mail Online, ‘ Disabled benefits farce: 94% of new claimants have never been assessed by a doctor.’
180 disability hate crimes are committed every day in this country.
While obviously every case of fraud is one too many, the fraud rates of disability benefits are very low. The scrutiny over benefit claimants has had consequences. It has become quite clear that certain sections of society feel that because some people with disabilities receive a form of state assistance, funded by the taxpayer, they should then get a say over their lives. A judgement, a decision over who exactly fits into the category of ‘disabled’ and who does not, and how they should be living their lives. Also over the last few years the support systems available to people with disabilities have been slashed – within the NHS, Social Services, charitable funding and the benefits available to them. Yet the public outcry to this has been minimal. Perhaps they’re too busy reading stories of the lavish lifestyles of benefits claimants, and mainstream documentaries portraying a vision of exactly what these ‘scroungers’ get up to behind the scenes, which increases support for further cuts.
The reality of the situation is completely different – the vast majority of claimants are genuine, and live in fear of the brown envelope arriving from the Department of Work and Pensions saying their support is being reassessed, causing stress and anxiety it may be lost entirely, or reduced. This fear isn’t unfounded – it’s a stated aim by the government. The money is vital in paying for care, transportation and all the high costs associated with having a disability, of which there are many. The Joseph Rowntree Association has found that people with a disability should be receiving at least £200 more per week just have to have an acceptable quality of life, with the rate increasing significantly depending on their needs and disability.
The poverty rate for disabled adults in the UK is twice that for non-disabled adults.
Disabled people shouldn’t feel dehumanised, excluded and invisible. But how do we stop this trajectory from happening, and make inclusion a priority?
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Let’s start with a fundamental truth: having a chronic illness sucks. There’s no denying that.
However, looking at the people I know who live with a variety of long-term conditions, a lot of them have developed certain skills that can help them.
When you have a chronic illness, your body often fails you. You frequently have to stop doing normal everyday tasks, activities and hobbies that you once enjoyed. Your illness can change on a daily basis, or even multiple times within an hour making it very difficult to plan anything in advance.
Resilience is defined as the “ability to spring back into shape and recover quickly from difficulties.” It’s something those of us with chronic illness have to do every day. Any day can bring a new symptom, a flare up or even a new diagnosis. We have to learn to live with that, and deal with our new circumstances, whatever that may be.
We’ve been dealt a certain hand of cards, and we can’t give up or take a break from it – we just have to keep fighting.
Strength is a fundamental facet of chronic illness. The strength to drag ourselves out of bed even when every cell in our body is screaming ‘what the hell are you doing?’ Or strength to put a happy face on when you’re meeting friends, or going to a family function. It takes a lot of strength to keep going, no matter how bad things get.
But there’s also the strength needed to advocate for ourselves – because even if you’re fortunate enough to have supportive family or friends, you know your body best and you will have to fight for what you need, often over and over, and have to be brave enough to ask for help when enough is enough.
Having a health condition means we need to become an expert in lots of different areas. Whether it’s our condition, treatment, benefits/welfare, how to obtain assistance, relevant laws and much more – we have to know it all! We’ve constantly got a new battle on our hands, as it’s rare help gets handed to us on a plate.
And having a rare condition brings added pressure, as we’re often also having to educate our doctors and medical professionals in what exactly our condition is in the first place (while trying not to annoy them!) before we’re even able to get onto treatment and management options.
Knowledge is vital for us to understand our own circumstances, and can also be very empowering.
Having health issues tends to open your eyes a lot more to other people’s struggles in a way you may not have even thought about previously. Compassion for other people comes more readily when you can relate to them due to your own experiences. Empathy is defined as, “The ability to understand and share the feelings of another.”
Chronic illness can cause an amalgamation of issues that aren’t just medically related, and it can make it easier to have an insight when other people experience their own difficulties.
In my own personal experience, I find when I mention I’m having a bad day, or share a fundraiser for a local charity – it’s my friends who have their own health issues who are the first to respond offering support.
Creativity comes in lots of different forms, from the traditional arts and crafts type, to the way you live your life. Through my own conditions I’ve tried to embrace my inner craft goddess, and discovered so many other people with disabilities also take part in similar pursuits. Perhaps because it’s a great way to distract yourself from pain, and also because enabling yourself to create something to be proud of brings a positive element to your life.
But creativity isn’t all glitter and glue – it’s also having to be creative with our own lives. You have to learn to think outside the box, find ways around issues and constantly problem-solve. The ways we used to do something may not now apply to us, such as hopping on a bus to go shopping. We may have to use our imaginations to devise easier and shorter routes, alternatives to carrying heavy items, and keep the trips out short and sweet to manage fatigue and pain. Instead of saying “I can’t do that” it becomes “How can I find a way to do that?”
If you know somone with chronic illness is having a bad day, why don’t you share this with them to give them a boost?
What would you add to this list? Please comment below with some of the skills you’ve gained, or skills that you see your friends/loved ones using.
There are lots of these special ‘days’ – Talk Like a Pirate Day (19th Sept), Hairstyle Appreciation Day (30th April) and National Sandwich Day (3rd Nov) but a really important day for me is Rare Disease Day, which is today.
A disease is defined as a condition that’s abnormal, and affects the body of a living being.
Here are some facts about rare diseases:
- There are over 6000 rare diseases
- A disease is classed as rare if it impacts fewer than 1 in 2000 people
- 30 million people live with a rare disease in Europe
- 80% of rare conditions have a genetic origin
I have Ehlers-Danlos Syndrome, a genetic connective tissue disorder.
There are various types of the condition and the most common type is estimated to impact anywhere from 1 in 5000 to 1 in 10,000 and the least common types have only been diagnosed with a small handful of people.
Rare diseases are neglected – in research, care, NHS services and provision of medical expertise. There is a lack of understanding and awareness in every part of the medical community. But rare doesn’t mean we don’t matter.
While I had mild symptoms from birth, the real trouble started when I was 15 – and it took me another eight and a half years to be able to put a name to my pain, fatigue and countless other symptoms. I’m lucky – many others don’t get diagnosed at all. That’s why recognition is vitally important.
Many seeking answers are instead labelled incorrectly. The word hypochondriac sneaks into their medical notes. They’re told their attitude is too negative, or point-blank informed it’s all in their heads. People with the condition usually look perfectly healthy, which makes it even easier to get dismissed.
Some people don’t live long enough to have the reassurance of knowing they were completely right, and there was a reason they felt the way they do like in this awful story.
Once I knew what was wrong with me, it changed everything. I was able to look for the national charities, find other sufferers and do copious amounts of research. Everyone should be able to do that – and from as near to birth as possible. Simple changes like strengthening your muscles before they become locked in a cycle of spasms, wearing orthotics to protect flat feet and looking out for the myriad of complications that can arise from the condition can make a big difference.
Awareness for rare conditions isn’t the same as for many other conditions. To me it can be summed up in the conversation that usually goes,
“So what’s wrong with you?”
And the response is a blank face.
I don’t expect people to know specifics – but if you said to someone you had MS, they’d probably at least gather it’s quite debilitating without having to try to explain further.
While that may not feel so bad – imagine that lack of recognition continues with your GP, your rheumatologist, physiotherapist – the people meant to be supporting your care, as well as everyone else. You have to spell the words out to them carefully, and they promise they’ll look it up – but yet the next time you see them they’re none the wiser, and you know they forgot to pop it into google. We deserve better, and it makes you feel very alone.
When I was diagnosed I spent an hour with the specialist consultant. He was the first person who nodded when I mentioned symptoms, and pointed out a lot I hadn’t even realised were significant. He literally started from when I was born onwards, and put together a pattern that led to my diagnosis.
However, an hour isn’t enough -not when you’ve just been diagnosed with a condition that impacts 95% of your entire body. Every organ, every joint. No one talked me through the heart issues, the gastrointestinal problems, bladder, muscle tone, nervous system, eye sight, breathing issues , and the terrible sleeping problems. No one told me that while you’re given a ‘type’ within the condition – there’s lots of overlap, and it’s mostly just guess work.
To this day I’m still finding new information, and putting facts together – and I usually find that out from other people with the condition, not a medical professional.
So this is what I want from Rare Disease Day…
I want every medical professional to have a brief understanding of the condition, and realise it’s only rare because they aren’t spotting all the undiagnosed people with it. Professor Grahame, a Ehlers-Danlos Syndrome specialist consultant carried out research that suggested “for every one person in England who is diagnosed by a rheumatologist as having hypermobility syndrome, there are probably 19 that aren’t yet diagnosed.” That’s around 85% of cases that are going untreated, being told it’s in their head, or being misdiagnosed. This has to change.
The most common sign of Ehlers-Danlos Syndrome is hypermobile joints – something that should be second nature for GPs/physiotherapists to have a quick look for if someone is presenting with wide-spread pain. I first heard the word hypermobilty from a physiotherapist I was lucky enough to come across. She asked me if I knew I was hypermobile, and I said I didn’t know what she meant. She explained it was also known as being double-jointed, but the only time I’d ever seen people mention that was when people did funny tricks with their hands. My hands looked normal. “Of course you’re hypermobile,” the physiotherapist said to me. “Just look at you, look at your toes, you just are!”
That’s all it takes. One person to have the knowledge. To be able to spot hypermobile joints, to notice the person with pain in every joint that is getting negative results to every test, to the person gesticulating with their hands as they speak, with bruises or injuries they don’t remember getting, that might be a bit clumsy. If you spot just one of those things, just have a think about mentioning Ehlers-Danlos Syndrome and you might change someone’s life.
Credit to cuervo
Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things?
Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already. First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous. I don’t mean to feel sorry for myself, but I’m still learning so much about this condition. I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works.
Then back to the wheelchair. I bought this chair in July. Well, when I say I did – actually some members of my family clubbed together to buy it for me, but we made the error of buying it from Betterlife Healthcare – a company we now know to have appalling customer service, questionable ethics, and a very much ‘we don’t care your wheelchair is a pile of crap’ attitude.
It’s brilliant to have a chair that jams on everything going, let me tell you. I particularly loved in when my chair stuck fast on the flat ground when coming out of a church, with 200 wedding guests behind me. Or when my mum tried to unjam the chair in a shop, and the footplate came free so quickly she fell on the floor and her arms and legs were covered in bruises. Or when I left work the other day to pop to a shop and it jammed on a flat pavement – and an 85 year old in a wheelchair, with an oxygen tube, had to stop and help me!
And yes, we’ve complained. Their attitude can be summed up with ‘haha, we have your money, now go away.’ I don’t actually want a refund, I want a replacement – because a refund will leave me without a goddamn chair, and it was so incredibly hard to find a chair that met my requirements in the first place (and I promise it was basic needs, not ‘it must be glittery pink’.) I have searched for a new chair, but the next type that meets the standard of being light enough to lift into a car and foldable seems to jump up by about £4000.
Then I found this charity called Action for Kids, which despite its title is meant to offer help getting a wheelchair for up to 26 year olds. I contacted them months ago, and was promised a visit which has yet to occur, despite constantly chasing them. When I phoned to find out their requirements they seemed very confused, and they gave me an extensive medical form to fill in – of which listed only very specific conditions and total paralysis were mentioned, which is very confusing because people with those conditions would qualify for a wheelchair from the NHS as they would be totally unable to walk.
Oh yes, did you know the NHS has a wheelchair service? When I first was referred for chair a few years ago their policy for an electric wheelchair was that you had to use it indoors and out. As I lived in a postage stamp house I couldn’t fit a wheelchair in it, so that ruled that out and they gave me a manual one instead. This was great, except I manage about a quarter of a turn before my shoulders and arms go into spasm, and don’t recover for about a week, which meant mum was forced to push me, which is not easy. You think the world is wheelchair accessible? There isn’t much I can say, other that it’s not.
So then we skip forward to buying the crap electric wheelchair, and it constantly breaking down. We then moved into an accessible bungalow and I am now having to use the chair a lot more now, even in the workplace. So I contact the NHS again and they inform me the policy has changed – they now only give them to people who cannot walk a step. Ever. I explain I cannot use a manual wheelchair. She’s sympathetic. I tell her my mum has damaged both her shoulders from pushing the chair, and lifting it in and out the car. She’s even more sympathetic. Then she tells me tough luck, policy is policy. Okay, she didn’t use those words – but it was implied.
And so I am here with a wheelchair which currently has no footplates. I got replacements a couple of weeks ago, but they both snapped off last week. On even ground. Action for Kids implied it would be months and months before I got near the top of the list, plus they judge you on whether you actually deserve a wheelchair (i.e. not on medical grounds, but there is a section on why you think you should be given one).
The warranty for my chair runs out in July. If I ask for a refund for the chair I will struggle to work, run the access group, or go out anywhere. If I don’t I’m stuck with it forever.
I need to apply for grants, but I just don’t have the energy at the moment.
I kind of need a shoulder to cry on right now, as it’s all a bit overwhelming, and at the same time I need someone to say oh pull it together and stop whining, you aren’t having babies any time soon, and it’s just a fricken wheelchair!
Yeah, it’s one of those nights.
What do you think of ME? That condition people have when they don’t want to work? Yuppie flu? We are all tired – so stop whinging?
The medical community and the media has portrayed a certain image of ME that doesn’t live up to reality. Did you know ME is actually a neurological condition similar to MS? That people regularly die from it?
Some years ago the condition was renamed in some circles as ‘Chronic Fatigue Syndrome’ and pedaled as a mental illness – which couldn’t be further from the truth. Many activists are now trying to divorce the two conditions. Chronic Fatigue seems to be a catch-all for long-term fatigue to which no other cause can be found, yet ME is testable, and so much more than fatigue.
I don’t normally link to The Mail, and in some ways I find this article funny, as they probably wrote 90% of the articles calling people with ME lazy, job-shy malingerers, but it’s a good look at the myths of ME.
Ron Liddle from The Sun wrote a column condemning the ‘fake disabled’. He says, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”
Peaky? This describes people that often become totally bed-bound, are in crippling pain, too exhausted to lift your head off the pillow or have to use a wheelchair. ME regularly kills people after ravaging their immune system, although the press keeps quiet on that. People don’t speak of the young people having to live in their beds due to the pain Fibromyalgia causes.
Another charming person, this time James Delingpole from The Telegraph, writes in support of Ron, claiming that there are eleven million people now saying they are disabled, and this it what’s crippled the economy. Eleven million disabled people there may be, but only 2.6 million claim Employment and Support allowance, the ‘not able to work’ benefit. The other 8.4 million actually work. Crazy, I know! (No reflection on those that can’t work meant, just that there is an assumption that disabled people don’t partake in employment.) It may be many people now fit the definition of disabled, which is ‘A physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to carry out day-to-day activities’ but the vast majority of disabled people try their best to work.
Another couple of points on these multitudes of disabled people crippling the economy is that Employment and Support Allowance is around £97 a week, and if your partner earns over £5343 a year you get nothing. The governments own figures put the fraud rate for ESA at 0.3%. The fraud rate for Pension Credit is 2.3%, but nobody seems to mention that. They are also bringing in a change that people can only claim contributory rate ESA for a one year. After that year they’re means tested, with a limit of £6000 in savings.
There is another disability related benefit – Disability Living Allowance, that is frequently used to support working. The extra costs of being disabled is significant. Equipment costs a fortune, needing transport on every journey soon adds up, treatment that enables you to work is often not covered on the NHS, heating for those with joint issues, extra cleaning costs, heat pads and so on. So this benefit is often used to pay for all those bits and pieces, or actually extremely important functions that allow people to work, and as a result pay taxes.
This is having a real impact on people’s lives. The suicide rate is constantly increasing and if the changes to DLA go ahead – where one suggested option is to remove the mobility allowance from wheelchair users with the idea a wheelchair makes someone independent, this suicide rate is going to vastly increase – no doubt about it. That ‘free car’ often complained about is something where you can cash in part of your allowance in return for a leased car. This allows people to have low-cost adaptations and transportation that meets their needs. The adaptations I needed came to a few thousand pounds, and really the adaptations didn’t amount to that much.
DLA is incredibly hard to get. The stress and torment people have to go through to get it is indescribable. People with terminal illnesses get turned down. This is why the fraud rate is so low. Yes, of course people will always slip through the cracks – it’s easy to lie about something that isn’t personal to you, and even suck doctors in with it. And these are the other that papers scream about, this 0.5% that makes the news daily – Scroungers! Work shy! Liars! They don’t point out the 99.5% that are genuine.
I’ve just spent three weeks with many chronically ill people, most with multiple painful illnesses, and the vast majority of them worked full time, way past what they should have done. Many volunteered on top of that work, others were carers for other people. Hardly any of them were on the benefits they should have been and were struggling financially. Many had been awarded DLA at a very low rate, when they should have been entitled to a much higher rate, but were too frightened to fight as they will frequently turn around the remove the whole award.
The demonisation of disabled people, fed directly to the media by the government in order to make these changes, needs to stop. Hate crime against disabled people is up by 75%. Seventy five goddamn percent! Probably because every time someone opens a newspaper they find a story they’ve been fed about that tiny 0.5% of people incorrectly claiming Disability Living Allowance, or a story about people claiming they have a “fake” condition like Fibromyalgia to get the so-called free car handed to them.
Credit to bsr dk
I was never sure what I wanted to do when I was growing up. Many of my friends had obvious interests or skills which led to a clear career path. But I wasn’t particularly good at anything at school. I was okay at English, okay at IT. I was appalling at art, and told basically to just stop, which is funny because I can be creative, but not in the very narrow way they wanted me to be.
I picked my A Levels based on enjoying English and IT, and quite liking the teachers I spoke to who taught Psychology and Politics at the college. I then found I really enjoyed Politics, and found a kind of passion in it, which then encouraged me to do a degree in the subject. Many people see it as a staid, dull subject, full of middle class white men arguing and waving their fists at each other.
In reality, that’s a tiny part of what politics is. Politics is everything. It’s the area you live in, the roads you drive on, the places you visit, your income and the way we as society treat each other.
One thing I picked up on quite early was how housing can have such a profound effect on your life. Housing has a direct impact on your education (how can you study without a quiet, safe environment?), your health – (can you be truly healthy in a cold, damp property, or with stressful neighbours or landlord, or with expensive repairs hanging over you) and even your life chances. Have you ever pulled a face, or immediately judged someone based on the area they live? Employers certainly have. It can decide just how safe you feel depending on crime in the area. It can decide the catchment area of your school – good or poor, which can then have a direct link to whether you go on to university.
High Rise flats vs posh house
While I was at university, I chose to take a lot of modules based around social policy and housing policy as I found it so interesting. Then, during a summer break, an opportunity came up at a local charity that worked in the housing sector. Their aim was to assist older and disabled people to stay in their homes via adaptations, grants and advice. The job on offer was to set up a gardening service was a subsidy for people on low incomes.
I loved it. I started the service from scratch, and decided how it would all work. It took awhile to get going, but it became a thriving service. Many people see a gardening scheme as cutting grass and pulling up weeds. But it was so much more than that. For many of my customers the gardener was the only person they saw all week. For many others, they’d lost their partner who used to look after the garden, and seeing it become a jungle was soul destroying. Others were housebound and the garden was their only view to the world. It made me realise how a service, even one perceived as small, could make such a positive impact on people’s lives.
My job role expanded to take on new services, and I was given the opportunity to write the business plan for the agency, along with the marketing and fundraising strategy. We began to prepare to expand all of our services, and bring new ones on board. I began to coordinate staff, and recruited new ones. My job role was sent to head office in order to change my job title and wage to reflect all my new responsibilities.
We then received the devastating news that the company had decided to close down their charitable wing. We were informed they were trying to find alternative organisations who may be interested in taking the agencies on. It then got a little complicated – one construction agency agreed to take on agencies across the country as long as they had a reasonable contract left. We didn’t. They requested our contract with a council to be extended, but they refused, which meant we were given redundancy notices. There were months of turmoil, one minute being told we were okay, the next that we’d be let go.
It was a difficult time, because I was really worried about finding employment with my disability. I had some job interviews, but didn’t get anywhere. However, eventually the contracts were reoffered and three organisations applied. Two I’d heard of and was hoping one of them would win as I liked their ethos. I hadn’t heard of the third. The council kept dragging their heels, however, and we were told by our existing company we’d be kept on for one more month but then they would have no choice but to let us go. At this point they’d given notice 18 months previously they wanted to leave, and given a date to leave. It was six months past that date, and they’d continued to keep us on – while trying to compromise with the council over and over. The council knew they had a month deadline, but waited until the end of the final week to finally announce the third company I hadn’t heard of had won the contract.
It was hard to even feel relieved at this point. I felt battered and bruised. Over and over we’d been told we were out the door, and then safe, and then back to being goners. My stress levels were very high by that point, and my worries turned to the new company. My current manager had been very supportive over my condition, having suffered from chronic pain in the past herself. We’d worked together to put in place reasonable adjustments around working from home, equipment, flexible working and more. I never had to work consecutive days, something I found impossible. My manager understood my worries about going into the new organisation, and so requested an urgent meeting to start the ball rolling and put my mind at rest.
The words ‘it was all downhill from there’ seem very apt at this point. The story continues in the post “Any organisation is like a septic tank. The really big chunks rise to the top.”