How local authorities are breaching the Care Act and getting away with it

I am a 45-year-old "younger" adult in receipt of social care.  To be honest I don't feel that "young" at 45 but social workers use common words and phrases in a completely different way to everyone else.  In case you were wondering "younger adult" refers to anyone over 18 and under 65.

For over 20 years I have been struggling to live some kind of a normal life despite my health problems and physical limitations.  I'm sad to say that I have found that more often than not social care is incapable of care.  There are some wonderful, caring people working in social care but the system has been decimated by austerity and decades of chronic underfunding so local authorities can't provide the help and support needed by "younger" and older adults alike.

I am chronically ill and physically disabled.  I have a connective tissue disorder called Ehlers Danlos Syndrome, and I also suffer from autonomic dysfunction, histamine intolerance, Sjogren's Syndrome, chronic pain, chronic fatigue and chronic inflammation. There is no cure and no treatment.  I try to manage my symptoms with painkillers, pacing, physio and diet.  Every day brings new challenges but I put on a brave face and try and live life to the fullest.

I am a part-time wheelchair user and I need support with all daily activities that most people take for granted, such as having a bath, cooking a meal and going to the shops.  I'm lucky to have some support from my husband and family but they have their own lives and responsibilities, and their own health problems to deal with.  In order to maintain good relationships with them, I don't want to have to rely on them for everything.  I don't want to be a burden.  I want to be a wife and mother.  I want to be able to do things for myself, even if that means needing help from another person to do it.  Unfortunately, from my experiences with social care that is too much to ask for.

I've been on Direct Payments (also known as Personal Budgets) since 1998 and I've seen a lot of changes over the years.  The Care Act 2014 was the biggest change of all as it provided national guidance when previously each local authority had their own policies.

The Care Act 2014 is law and is explained in plain(ish) English in The Care and Support Statutory Guidance.  The document is about as long as the complete works of Shakespeare and it reads both as a comedy and a tragedy.  It's not supposed to be but as a "younger adult" with a dark sense of humour, I can only laugh at the optimistic statements about achieving outcomes and cry about how my local authority ignores every single word of it.

The Care and Support Statutory Guidance states:

1.1 The core purpose of adult care and support is to help people to achieve the outcomes that matter to them in their life.  

Cue the first laugh from me.  My experience has been the exact opposite.  I've had five social care reviews since the Care Act came into force.  Not once have I been asked about my outcomes or what matters in my life.  In preparation for my most recent social care review in October 2019 I wrote down seven outcomes that I would like to achieve.  I gave the social workers a copy, I even emailed them a copy in case they lost the paper one.  They completely ignored my outcomes and when I complained they denied that I had ever mentioned them.

My local authority is failing to meet the core purpose of social care.  And that's just the beginning.

I've been locked in battle with my local authority for the last 18 months.  Here's a little background to set the scene.

In May 2017 I had an annual review.  This happens about once every 18 months.  Social care has always been oversubscribed and underfunded so in my local authority annual often means 18 months.  The review meeting took place at home and it lasted about an hour.  I was asked about my needs and as nothing had changed my Personal Budget remained the same at 24 hours per week.

The breakdown of support included

• 15 hours per week Personal Assistant support for personal care, meal preparation and parenting my three children, 
• 3 hours per week for domestic tasks, including cleaning, laundry and food shopping, 
• 6 hours a week to access the community, which basically means getting out of the house and doing all the normal things that people do like meeting a friend for coffee, going to the library or attending appointments.   

I was happy with this level of support.  It met my needs, it allowed me to live my life the way I wanted to.  It also gave me the flexibility to deal with emergencies like picking up a poorly child from school or when the hospital clinic running two hours late.

Since my PA of eight years retired in 2016 I have struggled to find and retain staff to work the hours I needed.  No-one wants to work the tea-time shift and half the people who apply for the job are only doing it to keep their unemployment benefits.  Eventually, I got lucky.  At the beginning of October 2018 I was employing two PAs and life was good.  Then I got a phone call from my local authority and my world got turned upside down.

A Community Care Officer phoned to make an appointment for my annual review.  It had been 17 months since my last one.  Nothing had changed since my last review and according to the Care and Support Statutory Guidance, my support should have stayed the same.  It says in section 13.33 

Periodic reviews and reviews in general must not be used to arbitrarily reduce a care and support package. Such behaviour would be unlawful under the Act as the personal budget must always be an amount appropriate to meet the person’s needs. Any reduction to a personal budget should be the result of a change in need or circumstance.

So no change in need and no change in circumstances means no change in budget, right?  WRONG!

The assessment got off to a rocky start.  The community care officer couldn't get her laptop working so she had to use pen and paper instead.  I told her everything was pretty much the same as last time but she said she had to do the review as a brand new assessment.  I didn't know it at the time but this was actually a breach of The Care Act.  The guidance says reviews must be proportionate and a ‘re-assessment’ cannot occur without the local authority first conducting a review and then deciding that a revision of a plan is necessary.

The review was very stressful and tiring. I had to describe every minute detail of my day, justifying why I need help to have a bath, why I need help to get dressed, describing how I use the toilet and other personal questions.  It lasted over 90 minutes.  It would have been longer but I had to stop because I was exhausted and I had a migraine.  As the community care officer packed up her things she said she would be recommending that my support remain the same.  I was relieved it was all over for another year, or maybe 18 months.  I took my pain killers and had a nap.

A couple of weeks later I got a phone call from an OT offering me an assessment.  It was a surprise as no-one had mentioned an OT referral.  I'd had two OT assessments in the last three years and I already had all the equipment I needed (apart from a stairlift which I couldn't afford and I wasn't eligible for a grant for) so I kindly turned the offer down.  There's a long waiting list for OT assessments and I didn't want to waste their time.  The OT phoned back an hour later saying her manager said I had to have the assessment to "prove" I needed the personal care support that the community care officer wrote in her assessment.  I had no choice but to agree.

I won't go into detail about the OT assessment because it is very triggering for me.  Let's just say the OT was sanctimonious, argumentative and disagreed with everything I said on principle.  She promised it would be a brief visit yet she dragged it out for nearly 90 minutes.  She demanded I justify what the community care officer had written in the assessment.  I didn't know what to say because I hadn't even seen a copy of it yet.  The OT bullied, mocked and belittled me until I broke down.  She left me sobbing as she closed the front door behind her.  Her parting words were spoken in a slow, patronising manner.  She would be writing everything down and she would recommend my support remain the same.  The last part was a total lie.

I was still upset when my PA arrived an hour later.  She said I shouldn't have thrown the OT out on her ear for treating me the way she did.  I complained about the OT's behaviour but she denied everything.  As her manager had not witnessed her behaviour nothing could be proven, so nothing was done.

A couple of weeks after that I received a phone call from the Notts Enabling Service.  I had no idea who they were and I was reluctant to give out any personal information over the phone.  They asked me what I'd like to be able to do.  I wasn't sure what to say.  There are lots of things I'd like to be able to do but my health problems get in the way.  If I push myself too hard my symptoms get worse and it can take days or even weeks to recover.

I asked them what exactly do they do? The lady was quite vague but she did give two examples.  She said they taught a young man with a learning difficulty to choose what clothes to wear and they also taught a woman in a wheelchair how to cook. She sounded a little patronising.  I'm too independent for my own good (sometimes to my own detriment) and I didn't think it would be helpful to me so I politely declined the offer.

I already know how to do everything I want to do, I just can't physically do it due to the nature of my disability. My joints are hypermobile and unstable, I struggle with severe pain and fatigue, I can't stand without feeling dizzy and faint, my grip is poor and my muscles go into spasm.  My symptoms change from hour to hour and every day is different.  One day I may be able to do a task for an hour, the next day I may be bedbound and effectively useless. Even if they could teach me how to do a task there is no guarantee I would be able to do it reliably or independently on a regular basis.  I would still need support.

An OT once told me I need to learn how to pace better and delegate more.  This is where a good PA is worth their weight in gold.  They allow me to do things I'm not physically capable of without risking my health.  I can be involved in tasks and in control but when I need help or I need to stop the PA can support me or take over and finish the job.  They can also help me monitor my health.  When I'm busy doing something I often don't notice the warning signs that I've done too much but with training my PA can tell me to correct my posture when I am rolling my ankle or encourage me to take a break when I go pale or start to shake.

A few days later the NES me a brochure in the post.  It said the service was for people with autism, learning difficulties and younger adults with physical disabilities.  I didn't think it applied to me because I was 43 at the time and hardly "young", but as I mentioned at the start of my story, social care uses words in a different way to most people.  "Younger adults" means under 65.  I'm sure the service would be helpful to some people but I just found it a bit patronising and yet another way of reducing support.

https://www.nottinghamshire.gov.uk/care/adult-social-care/help-living-at-home/enabling

Twelve weeks after my annual review I received an email from the community care officer.  After both reviews I was told my support would stay the same so I was shocked to learn my support was being reduced from 24 hours to 16.5 hours per week.

I was not happy!  I complained.  The local authority told me it is their policy to promote independence and they cannot continue funding packages of care when they are questioning the amount.  I had no idea why they were questioning it.  My support hadn't changed in the past four years and neither had my needs.  It was only much later after I complained to the Local Government Ombudsman that I discovered the truth.

The local authority had already decided to cut my budget before they even reviewed me.

Every year the adult care finance team audit my Direct Payments.  I send them copies of my bank statements and invoices to prove I have been using my budget correctly.  If I have too much surplus money in my account they ask me to pay it back.  In 2018  returned a large sum of surplus funds, just over £6,000.  The local authority assumed that this had been accrued over the previous 12 months.  They told the Local Government Ombudsman that this showed I was not using all of my support hours.

This was incorrect.

During 2016 and 2017 I had to recruit new staff.  Recruiting can be quite costly so following my annual audits in 2016 and 2017 I asked the adult care finance team if I could keep my surplus funds to cover these costs.  They agreed.  By the summer of 2018 I didn't need the surplus funds any longer so I paid them back.  I returned three years of surplus funds accrued when I was unable to recruit staff or find agency cover, minus what I'd spent on recruitment support.  Three years, NOT twelve months.  I gave the LGO copies of bank statements which proved the local authority had made a serious error, but by this time it was too late.  The local authority had already implemented the reduction in support.

My physical and mental health suffered as a direct result of their error.

Anyway, back to my complaint response.  The local authority said there was an expectation for my husband and teenage children to perform all the household tasks, meal preparation and assist me to access the community.  My husband works full time, he's out of the house for 10 hours a day, 5 days a week and both him and our children suffer from physical and mental health problems.  I gave all this information to the community care officer during my assessment but they ignored it.  I spoke (and disagreed) with the OT about it too.  I said my husband can't do everything (meaning working full time, doing all the household tasks, caring for me, caring for the children, being a parent, having a life and looking after himself).  She bluntly told me she was a single parent and she had to do everything.  As a social care professional, I hoped she'd appreciate the differences between our situations, but she didn't.

I still had no idea why the local authority cut my budget by 7 hours a week.  I asked to see a copy of the assessment.  I still hadn't seen it, so I didn't know what had been written about me or if it was even correct.  I was told if I wasn't happy with the decision they would do another assessment.  My heart sank.  I'd already endured over 3 hours of interrogation which had caused physical pain and mental anguish so I declined and I asked again to see a copy of the assessment.  They compromised by sending me a self-assessment form that I could complete at my leisure.  I asked a third time for a copy of the assessment and they finally agreed to send it to me.

When I read the assessment it seemed very familiar.  That's because it was almost word for word the same as my previous assessment.  The community care officer had cut and pasted everything from the last assessment and added the odd sentence for clarity.  Everything else was the same, except for one section - "Differences of Opinion".

I could tell this section had been written by the OT because it contained all the things we had disagreed about.  It included several things that were not true and mentioned several things that we hadn't even spoken about.  The local authority used this biased and incorrect information as evidence to reduce my care.

My hours were now broken up into the following allocations:

• 1 hour per day (5 days a week) for personal care
• 30 minutes (5 days a week) for lunch prep
• 30 minutes (5 days a week) for evening meal prep (but my husband is expected to help with this or I could use my own money to pay for the local "Meals at Home" service - more about that later!)
• 30 minutes domestic support per week to clean the kitchen and bathroom
• 6 hours per week to access the community, including going to my medical appointments, taking my children to their medical appointments, doing food shopping.

There were many problems with this.  There was no support for parenting, there was not enough support for evening meal prep or making packed lunches and there was no allowance for flexibility.  If one task took longer than the allotted time I would be unable to meet my other needs.  I would have to choose between having a bath or going to a hospital appointment, buying food or making lunch.  It also made it impossible for my staff to meet my needs.  They had been doing two visits a day, but with this reduced support plan they would have to do three or four visits a day.  My staff were not prepared to do that as they would spend as much time travelling to work (unpaid) as they would working.  The support plan also relied on my husband and children making up the 7.5 hour shortfall in support, which they were not physically able to do.

I complained and explained why this plan would not meet my needs.  The local authority told me it would.  They gave me no other reason for the reduction.  This breached the Care Act.

The local authority also indicated that I had agreed to the assessment.  That was impossible as this box was checked before I'd even seen it.  I'm pretty sure that's not legal.

The 30 minutes a week for domestic support was a joke.  Both the community care officer and the OT mentioned it was "policy" to only allocate 30 minutes of domestic support per week if the service user lived with someone else.   The local authority said the Care Act states they only need to keep people's homes "safe and clean".  They interpret that as cleaning the kitchen and the bathroom once a week, which they reckon can be done in 30 minutes.  They said if I wanted more cleaning done I could use my benefits to arrange that privately.  They also said they had no such policy but they would not allocate more than 30 minutes per week.  So it is policy, just not a legal one.

Eventually, the local authority did concede that my husband's health problems made it difficult for him to do all the household tasks on his own, so they increased my support by 30 minutes per week.  My budget was now 17 hours per week.

I still couldn't believe it.  Nothing had changed and they cut my support by 7 hours per week.  They didn't listen to my complaints,  they ignored evidence which contradicted what the assessment said,  they just kept saying it would meet my needs.  They refused to discuss the matter any further and signposted me to the Local Government Ombudsman if I was unhappy with their decision.

I complained to the LGO.  I explained how the local authority had breached the Care Act in numerous ways, how the reduction in support was not sufficient to meet my needs and how my health was suffering as a direct result of the reduction.  It was a complete waste of time and I wish I'd not bothered.

It took the LGO seven months to reach a decision.  They found the council were not at fault.

The problem with the LGO complaints process is that they can only investigate if the local authority has failed to follow the correct procedure.

We cannot question whether a council’s decision is right or wrong simply because the complainant disagrees with it. We must consider whether there was fault in the way the decision was reached. (Local Government Act 1974, section 34(3), as amended) 

So if the local authority makes a decision without reviewing you, or they say you can't have a review when you're entitled to one then the LGO can say something about that.  If the local authority did everything right but made a completely insane decision then the LGO are not allowed to question that decision.

In my case, the local authority had followed the correct procedure. They had given me an assessment, they offered me another assessment when I was not happy, they offered my children young carers assessments (even though they don't care for me) and they offered my husband a carers assessment.  The local authority breached the care act and their decision making ignored all the evidence I provided but in the eyes of the LGO they were not at fault.  They did nothing wrong.

This is a massive flaw in the complaints system.  The local authority could have assessed me and decided my needs could be met by riding a unicorn to take tea with the fairy queen, and the LGO would not be able to question he decision because the local authority had followed the correct procedure.  It really is that ridiculous.

Even if the local authority had done something wrong the LGO has no power to make them do anything about it.  They can only advise what action should be taken.  The local authority is under no obligation to do it.  So basically local authorities can get away with metaphorical murder and no-one can stop them, unless you have the time, money and energy to take them to court.

A statement from the LGO's final decision said:

The Council confirmed to me that, where there is a disagreement with clients about a reduction in care package, the Council will carry out a review after three to six weeks to assess how the reduced package is working. 

As my support had been reduced seven months earlier the local authority had failed to do this.

One week after the LGO decision I received a phone call from a social worker.  She said they wanted to do an independent review.  I asked how it would be independent.  They said it would be conducted by a social worker who worked for my local authority but it would be someone I hadn't met before.  That isn't exactly independent but I had to agree with it.

I prepared for my review meeting by writing up seven outcomes I wanted to achieve.

·         To be able to manage my health conditions and pain
·         To be able to prepare fresh healthy food to follow my low histamine diet
·         To be able to support my husband and take care of my children’s needs
·         To be able to visit country parks to walk my assistance dog
·         To be able to go to a craft group
·         To be able to volunteer for Hug in a Blanket, make crochet squares and assemble blankets for sick and disabled children
·         To train as a volunteer speaker for Canine Partners to educate, raise awareness and fundraise for the charity who provided me with my assistance dog.

I wrote how the reduction in support wasn't working and how it was adversely affecting my physical and mental health and my relationship with my family.  I also wrote another page with all my medical diagnoses and symptoms, describing how they affect me and limit my ability to be independent.  I thought it would be helpful but I'm not sure why I bothered because everything I wrote was completely ignored.

I asked if we could keep the assessment brief, 45 minutes or less.  It lasted for an hour.  I went through all the highly personal questions again, justifying why I need help and why I can't do some things by myself.

The enabling service was mentioned again.  "So you don't want to be more independent?" the social worker said in a disapproving tone.  I found that insulting and upsetting.

I have done so much to maintain my independence, from buying a second-hand powerchair, and buying a smart plug so my Amazon Echo can turn my reading lamp on, to getting my assistance dog who can do at least 30 different tasks for me, including fetching another person or bringing me the telephone in an emergency.

The differences of opinion reared their ugly head again too.  The social workers made it absolutely clear there was an "expectation" for my husband and children to do all the household tasks, such as cleaning, laundry and shopping.  My husband was present for the assessment and he said he often doesn't sit down until late in the evening because he's busy looking after me and doing things around the house.  I tried to explain how my children's health problems prevented them from performing the expected tasks but they insisted that there was an expectation for them to be involved and if they have "needs" I can refer them to children's services.  They also offered them young carers assessments again.  I can't understand the point because they are not young carers.  They don't care for me and I don't want them to care for me.

Three weeks after the review one of the social workers emailed me to ask for more information about my children.  They wanted letters from their health professionals and more information about how their conditions affect them.  I thought this was odd because in the assessment they said they could not consider their needs, but I was hoping they would consider them.  Despite me spending hours collating hospital letters and writing up all their symptoms and problems everything was ignored.

I was also asked to give consent for the local authority to contact my health professionals.  I wasn't sure how to word it so they sent me a draft letter which gave them blanket consent for them to contact absolutely anyone about me.  I wasn't sure how safe that would be so I wrote my own letter giving them consent to contact my GP.

Twelve weeks after my 2019 review I received a copy of my assessment and support plan.  The local authority had decided my needs could be met with 17 hours of support per week.

Nothing had changed.  All the evidence that proved 17 hours was not enough had been completely ignored.

There were numerous errors in both the assessment and support plan.  I was asked to sign a letter to state that I agreed with the assessment.  I wrote a three-page response detailing all the errors and stating how I did NOT agree with it.

One of the issues was regarding meal preparation.  I have a medical condition called histamine intolerance.  It was diagnosed by an NHS consultant and it causes chronic inflammation and allergy type symptoms.  I was advised by my consultant to follow a low histamine diet.  It's a very complicated diet.  Many foods are excluded, including hidden ingredients such as preservatives and thickening agents, and everything must be absolutely fresh.  My consultant told me to avoid processed, pre-prepared and reheated foods.  All of this information was recorded in my assessment but the local authority decided that if I wanted to be "flexible" with my budget I could use the Meals at Home service.  They produce bland, school dinner type meals for frail pensioners who can no longer cook for themselves.  I looked at their menu and it was not appetising, plus over 90% of the foods were not suitable for me.

https://www.nottinghamshire.gov.uk/media/1743025/countyenterprisefoodsbrochure.pdf

I told the social worker about this.  She said the food was suitable because they can cater for allergies.  This is coming from someone who repeatedly called it an "anti-histamine diet" rather than a low-histamine diet.  I explained why Meals at Home food was not appropriate but they insisted that it was, so I called their bluff.  I emailed County Enterprise Foods and sent them a copy of the food compatibility list that my consultant had given me.  They replied two weeks later saying they would not be able to meet my dietary requirements.

I informed the local authority and forwarded a copy of the email from County Enterprise Foods.  Their response said what I had told the Meals at Home service was "too rigid" and they believed that my diet was based on my own personal research.  I corrected them and provided evidence in the form of diagnosis letter from my consultant.

A few weeks later I received an updated copy of the assessment and support plan.  They had changed two things but many errors remained.  I dumbed down my response to them so there would be no misunderstandings.  I annotated a copy of the documents indicating exactly what was wrong and why.

Another issue with the assessment was about my volunteering.  One of the core wellbeing areas mentioned in the Care Act is access to work, education or volunteering.  I wanted to volunteer to assemble blankets for sick and disabled children but I would need help to do this.  The local authority said my husband could help me or I could use my community access hours to do this.  If I did that I wouldn't have time to leave the house.  That didn't seem right because the volunteering would be done at home, not out in the community.

I explained my husband was not able to help me.  I needed to do certain tasks in the daytime, work to a deadline and post the blanket by Royal Mail as soon as it was completed (funding for which was provided by the charitable group).  They responded and said my husband can help me in the evenings and weekends and I could use another delivery service.  This was just not possible.  Even if my husband had the time and energy to help me I would still need to complete some tasks in the daytime when he is at work to meet the deadline.

I asked why this outcome hadn't been recorded in the work, education and volunteering section of the assessment.  They said that category does not generate a budget, they signpost people to services and refer them to the enabling service.  I've become quite efficient at searching the Care and Statutory Guidance and I found an interesting statement.

6.106 h)  Accessing and engaging in work, training, education or volunteering - local authorities should consider whether the adult has an opportunity to apply themselves and contribute to society through work, training, education or volunteering, subject to their own wishes in this regard. This includes the physical access to any facility and support with the participation in the relevant activity.

This contradicted what the council had told me.  I wasn't surprised though.  Both the OT and social worker had admitted they didn't know what was in the Care Act.

I received a final response from the complaints department.  They stated that my assessment had been reviewed by five people and they were satisfied that it was accurate and that the level of support is sufficient.  They also said they cannot investigate a decision just because I don't agree with it.  They refused to respond any further.

The local authority has done so many things wrong that I have lost all faith in them.  I could write a book about all the other things they did wrong but it wouldn't make any difference.  I still haven't agreed to my assessment because I still haven't got a correct copy, but the support plan has been implemented regardless.  I don't know why they even bother reviewing me as it doesn't seem to make any difference.

The impact this has had on my physical and mental health has been devastating.  I've suffered severe stress and anxiety and I've spent hours crying about it.  I've lost count of the hours I spent reading, researching and writing letters but I have been powerless to change anything.

I feel like I'm worthless, I don't deserve any help, I don't deserve to live a full and independent life.  It's too much to ask for.  I am nothing and nobody.  I dread my next review because I don't know what they will cut next.

I don't know what I've done wrong.  It's not fair how they've treated me but the only option left is to take legal action and I don't have the time, energy or money to do that.

The worst thing about my situation is I'm not the only one.  My issues seem trivial compared to the other stories I have read.  Disabled people are being treated worse than animals, being forced to wet the bed because it's not essential to have support to go to the toilet when your needs can be met in other ways, such as sleeping on an incontinence pad even though you have continence issues.  Young adults are being forced into residential care because it's cheaper than supporting them to stay in their own home.

Local authorities are wilfully ignoring the Care Act and are barely meeting people's basic needs.  They don't have sufficient funding to consider people's wellbeing, outcomes or how they would like to live their lives.

Could you imagine being told you don't need to go to the shops because you can do an online order once a week?   

Could you imagine being told you don't need to cook fresh food because you could heat up a ready meal in the microwave? 

Could you imagine being told you don't need to go to the pub to see your friends because you could phone them instead? 

The whole care system urgently needs an overhaul and more than anything it needs proper funding.

My final thoughts return to the opening statement of the Care and Support Statutory Guidance.

1.1 The core purpose of adult care and support is to help people to achieve the outcomes that matter to them in their life.

My local authority has failed to do that.  They have denied me the opportunity to achieve my outcomes and support my husband and my children.  They have failed to implement a person-centred approach by insisting that pre-existing services, such as Meals at Home and the enablement service will meet my needs, without even considering what matters to me.  They have done the bare minimum they can get away with and assumed my family will support me without asking if they are willing and able.

I will be washed, dressed, fed and allowed out of the house for 6 hours a week.  I will be kept alive but it's no kind of life.  And no matter how hard I fight, there is nothing I can do about it.

The local authority won't respond to my complaints anymore.  I have been signposted to the LGO but I've already experienced how pointless that is.  The local authority has made it very clear.  Just because I do not agree with their decision does not make it incorrect.  Proof that they have breached the Care Act means nothing.  After all, five people from the same local authority department have reviewed my assessment and they can't all be wrong, can they?

Thank you for reading my story.

International wheelchair day - if you can afford one!

Happy international wheelchair day!

To be honest I didn't even know there was an international wheelchair day until I saw this post on Facebook.

Zebras on wheels! By Sally Ann Livingston

It resonated with me as it is very similar to my own story.  When I first had difficulty walking the doctors were dismissive and told me to do physio to strengthen my legs so I could continue walking.  I was misdiagnosed with ME at the time and no-one recognised my hypermobility never mind understood how it was affecting me.  I only got a wheelchair after I'd been effectively housebound for 6 months and then it was unsuitable for me.  I couldn't propel it myself so I had to rely on other people pushing it for me.

Getting a wheelchair on the NHS has become increasingly difficult due to lack of funding and an increasing demand.  In some areas if you can stand and walk even one step you won't qualify but that means your world shrinks limited to the distance you can walk.  Many people become housebound and that in itself can cause a deterioration of physical and mental health.  I know, I've been there.  I cannot describe how frustrating it is as a young person having to rely on your parents to push you in a wheelchair so you can get out of the house for a while.

It's easy to tell someone to buy their own wheelchair but they are expensive.  A basic manual wheelchair can cost around £200 and electric wheelchairs cost from £1,000 up to £20,000.  You can't just go to a mobility shop and try different types because the high ticket price and low turnover means they can't afford to keep them in stock but without an assessment you could be making an expensive mistake if the chair isn't right for you.

Mobility comes at a high price for disable people and many people don't appreciate the reality of the struggles we face just to get out of our front doors.

How physio might make me bankrupt

How far can you walk?  One mile?  Three miles?  Five miles?  Let's say you can walk five miles.  A reasonably fit and health person should be able to do that on a good day.

How would you feel if the government took your car away because if you can walk five miles you obviously don't need it.  And by five miles you must mean ten miles because if you can walk five miles you must be able to walk another five miles back again.

That's just crazy!  It would never happen, right?  But that is exactly what's happening to disabled people who claim Personal Independence Payments.

I'm physically disabled.  I have a condition called Hypermobile Ehlers Danlos Syndrome.  Walking is difficult and painful for me and I can only walk a few metres using crutches.  When I go out I have to use a powerchair which I had to pay for myself out of my disability benefits.  I'm not eligible for one from the NHS because I can walk a few metres indoors on crutches and it's not deemed essential for me to be able to move about outdoors.

I do physio every day to try and keep my body strong and maintain what little mobility I have.  My physio suggested I try and walk a little on the pavement outside my house.  I'm determined to be as healthy as I can be but I had to say, no.  Why?  Because I can't afford to do that.

I currently receive Higher Rate Mobility component of Disability Living Allowance but I am due to be migrated to Personal Independence Payment, which has a much stricter eligibility criteria.  The amount of money you get each week depends on how many points you score.  You must get at least 8 points for standard rate and 12 points for enhanced rate.  For people like me with a physical disability this means if I can walk:

• less than 20 metres = Enhanced Rate - £59.75 per week 
• more than 20 metres = Standard Rate - £22.65 per week
• more than 50 metres =  NOTHING.

So if someone sees me walking outside my home I could get reported for benefit fraud and lose the money I use to pay for my powerchair and wheelchair accessible vehicle.  The thought of losing my independence is terrifying and I realised...

I can't afford to try and walk because the government would financially penalise me and I would become housebound.

I know it seems a bit over-dramatic so I tried to think about it logically.  There has to be some kind of criteria for deciding who gets disability benefits.  Could a person be truly independent if they could only walk 60 metres without suffering pain or other difficulties?

I loaded up a route planner and measured how far it is from my house to the various places I need to visit.  I live in the suburbs of a small town.  It is:

• 550m to the bus stop
• 650m to the post box
• 750m to the nearest shop

And of course you have to double those distances because if I walk there I have to walk home again.  Based on a person being able to walk 60 metres, posting a letter would be over 20 times the distance they are capable of walking.  They wouldn't be able to live independently.  They'd need a wheelchair but they would have no means to buy one because they wouldn't qualify for disability benefits or a wheelchair from the NHS.

I don't envy the government.  I would hate to have to decide who qualifies for benefit and who doesn't but these benefits assessments are not fit for purpose and something must change.  Money doesn't always solve problems but the right kind of support is invaluable.




   

Planes, Trains and Mobility Scooters

If you've been following The Scooter Girl Campaign on Facebook you might have had a glimpse into the discrimination that mobility scooter users face on a daily basis.  Mobility scooters are an affordable mobility aid that's easily transportable.  This makes them very popular but when it comes to public transport there are so many rules and regulations it makes it almost impossible to know if you are allowed to travel or not.

Basically if you can't walk or have difficulty walking you have three options:

• a manual wheelchair
• a powered wheelchair
• a mobility scooter

Manual wheelchairs are available for free from NHS Wheelchair Services and can be bought for a few hundred pounds, but unless you are very fit and have full use of your arms you will probably need someone to push you.  Being pushed in a wheelchair isn't very nice, it impedes your independence and you can't just up and go when you feel like it.  Most manual wheelchairs are quite heavy but they can be folded up to go in the boot of a family car.  You can get lighweight active user wheelchairs but they can cost thousands of pounds.

Powered wheelchairs or powerchairs are great.  They offer greater independence and supportive seating but they are very heavy and very expensive!  They can cost anything between £1,500 to £30,000.  You can't just fold them up and put them in the car, you need a Wheelchair Accessible Vehicle or WAV with a ramp or lift to load the chair and passenger.  This makes them impractical for many people.  You can take them on public transport though.

Mobility scooters are an affordable and transportable alternative to powerchairs.  With prices starting at only £400 they are much cheaper than powerchairs but they offer the same level of independence.  The smaller car boot scooters can be taken apart and easily transported in the boot of a family car so you don't have to exchange your car for a van like WAV.  The only down side of scooters is access to public transport. Why?  It's complicated!

Scooters come in many shapes and sizes, from a tiny transportable scooter that can fold up into a suitcase to massive Class 3 vehicles than can be legally driven on the road. 

All three of these vehicles are classed as a mobility scooter but as you can tell they are all pretty different.

There is no way a Class 3 scooter (as shown in the third picture) would fit on a bus or a train but it is technically still a mobility scooter so in order to deal with this issue many transport companies put a blanket ban on all mobility scooters in place.  That pretty much discriminates against every scooter user, even those with tiny scooters.

Some transport companies came to realise this wasn't fair on their disabled passengers.  They decided that the smaller scooters were OK to to on trains and buses so they set up schemes whereby scooter users could get a permit if their scooter was within their requirements and if they could show that they could safely manoeuvre the scooter in tight spaces.  For most schemes the scooter must be less than 120cm long and less than 70cm wide.

The problem for scooter users is each bus and rail company has their own rules and permit schemes, so if you like to travel a lot then you need check the rules each different transport operator before you can travel and then apply for the relevant permits in good time before you plan to take your journey.

It's a total nightmare and people often don't know about these rules until they have a confrontation with a guard who tells them they can't travel with their scooter.  To the passenger their mobility scooter is no different to a wheelchair but according to the very letter of the rules it isn't.

Some operators still have a blanket ban on all mobility scooters except those than can be folded up into a suitcase and carried on the train as luggage.  That is rather short sighted as most disabled people who use scooters do so because they have great difficulty in walking!

We urgently need some kind of national scheme that identifies which mobility scooters can safely travel on all forms of public transport.  Until that happens then more disabled passengers will be unfairly discriminated against and that is just not acceptable.

Clair Coult

To check if your scooter is allowed on a train it is advisable to check the National Rail website.  It gives the policies for each individual transport company.  And don't forget to book assistance at least 24 hours before you travel as ramps are not always readily available.

Disabled Facilities Grant Declined

My OT says I need a stair lift.

I've struggled on the stairs for the last 20 years but it's not something I've actually thought about, mostly because I am not some frail white haired granny, I'm a curvy lady in my early forties with bright purple hair.  I am in denial about how frail EDS makes me.

Two years ago an OT told me I needed a stair lift.  He said I could apply for a Disabled Facilities Grant from my local council but because my husband was in full time employment earning above the average wage he said we had no chance of getting one.  He also said getting a stair lift to fit the 'U' shaped stairs in our home would cost £9,000.

Nine grand for a stair lift!!!  Needless to say we didn't take the matter any further.

My current OT insisted that I really do need a stair lift.  I am not safe walking up the stairs, it is not acceptable for me to crawl up the stairs or slide down on my bottom.  She encouraged me to complete a provisional test of resources form for a Disabled Facilities Grant.

A Disabled Facilities Grant is given to disabled people by their local authority to cover large aids and adaptations to their home such as ramps, accessible bathrooms and stairl ifts.  If you are on a means tested benefit you automatically qualify for a full grant but if you or your partner is working then they take the salary into consideration and calculate what contribution you would have to make towards the grant.  That sounds fair enough, right?

The problem is the grant is for people on a low income and my husband earns a little above the national average wage.  We're not poor but we couldn't afford to take out a loan for £9,000.

Last week I got a letter from the council telling me that they have cancelled my application for a Disabled Facilities Grant because our contribution was greater than the cost of the works.  I thought this was a little odd because I haven't actually had a quote for the cost of the works.  I phoned them up to find out why we'd been declined.

Apparently they had looked at our form and based on my husband's salary they had decided that we could afford to make a contribution of £25,000!!!  I was gobsmacked.  To put that in perspective that is 75% of his annual income.  We are not poor, but there is no way we could borrow that amount of money.

Today I spoke to my OT on the phone.  She suspected that we'd get turned down but was surprised at the contribution amount.  She was quite frustrated, she really wants to help me but there is nothing more she can do.  The only thing she could suggest is going begging to charities.

The most frustrating thing for the OT is that my situation is not unique.  There are many younger disabled people (i.e. not pensioners) who need adaptations but because their partner works full time they have to fund thousands of pounds worth of work themselves.  This doesn't really seem fair when non-disabled people can spend their wages on nice cars and foreign holidays but if you are unlucky enough to become chronically ill or disabled you have to pay for everything.

I expressed my frustration to my OT.  Yes, I do get some money to help with the extra costs of living with a disability.  I claim Disability Living Allowance (I haven't yet been migrated to Personal Independence Payments yet).  I get £21.80 per week for my care needs and £57.45 per week for my mobility needs.  That money doesn't go very far when you consider my spending.

£600 mobility scooter
£550 powerchair
£40 wheelchair cushion
£90 crutches

Plus I'm looking at paying £300+ for a knee brace because the NHS can't help me.  I also have to pay £104 a year for my prescriptions, then more money for my vitamins, supplements, Xylimelts for my Sjogren's, High5 Zero tabs for my POTS, kinesio tape to keep my hypermobile joints from wandering out of place, gym ball, therabands and weights for my physio, £15 for a mandatory eye sight test due to the medication I'm on, £85 a year for dental checks and to stay registered at the private dental practice (more if I need work doing due to the damage that Sjogren's does to my teeth).  The list just goes on and on and on!

So it looks like there will be no stair lift for me.  I will have to learn to live with the pain and exhaustion, the crunching of my knee with every step, the wobbles, slips and falls because my local authority doesn't have the funding to help people like me.  Apparently work doesn't pay if your partner is disabled.

Schrodinger's Cripple

Sometimes I have a hard time getting my head around my illness and disability.  I've been disabled by Ehlers Danlos Syndrome for so many years that living with the constant pain, fatigue and numerous other symptoms has become normal for me.  It's only when I have to take a long hard look at my quality of life in terms of a Social Services care assessment or a disability benefits application that I realise how very disabled I am.  It's quite depressing admitting your weaknesses but it's made me realise that what people see is can be a very different picture to who I really am.

If I post a picture of my dinner on Instagram and say, "I made this, it's so yummy!" you might assume that I am capable of cooking a meal by myself.  What you don't see is the PA who took me shopping for ingredients because I can't drive or get my mobility scooter out of a car on my own.  You don't see how I had to brace my knee and walk with a crutches so I can move around my kitchen, or how much pain and fatigue that caused me.  You don't see my PA peeling vegetables or lifting heavy pans off the hob because I can't do it.  You don't see me resting on my stool because the heat from the hob has made me go so dizzy I feel like I'm going to pass out.  You don't see me pushing myself past my limits through the pain and fatigue or the muscle spasms in my hand as I chop and stir.  You also don't see after taking that picture I feel too exhausted to eat the meal I just claimed to have made.

In my head I believe that I made the meal because I planned it and I oversaw the cooking of it but in reality if I had to make it from scratch on my own I wouldn't get past the first step.  Did I just make that meal?  Yes, but not really.  It's not as simple as yes or no.

Herein lies the problem.

Physically disabled people today have to be Schrödinger's cripple - there is an expectation for you to be an awe inspiring role model, a paralympic  athlete or successful entrepreneur bravely defying your physical limitations, but at the same time to get any kind of help from the government in terms of disability benefits or social care you have to be a invalided cripple who can't wash, dress or even convey food to your mouth, otherwise you get no help at all.  Very few people can be both but just because you can do some things doesn't mean you don't need support in doing others.

I currently claim DLA, Disability Living Allowance but some time in the near future I will be migrated to PIP, which has a different eligibility criteria.  The amount of money I receive each week could drastically change, I could get nothing at all or I could get almost £60 a week more.  I have no idea which, that is entirely up to the decision makers.  This is a great cause for concern for me because I rely on that money to provide the medical care, equipment and support that is not available to me on the NHS.

I looked up the eligibility criteria for PIP.  It's all done on a points system and it's very black and white. My condition changes on an hourly basis so I find it impossible to say if I can perform certain tasks such as taking a shower or walking a certain distance because they are dependant on many variables and fluctuations of my numerous medical conditions.  If I can do something one day there is no guarantee I can do it the following day, or even the following week.

To get the enhanced rate of the mobility component of PIP you must be able to walk less than 20 metres. How far can you walk?  This might seem a simple enough question to answer but for me it quite complex.  You might see me walk 20 metres on crutches from my PA's car into the GP surgery and think yes, she can walk 20 metres, but that is not the whole story.

You don't see how much pain and fatigue that caused me, you don't see how I had to make a maximum dose of pain killers and muscle relaxants when I got home because I pushed myself beyond my limits to walk that distance.  You don't see the damage I did to my unstable shoulders by using the crutches or the pain I will suffer for the next week because of it.  You don't see how I had to order pizza that night because I was too fatigued to even make a sandwich for dinner.  You don't see how I felt too ill to do anything the following day because I overexerted myself from desperately trying to be normal and independent and walking instead of  using a wheelchair or mobility scooter.

If the decision makers decide I can walk that 20 metres I wouldn't score enough points to get the Enhanced rate of PIP mobility component.  In real terms that means losing £1,853.80 a year in benefits (or nearly £3,000 a year if they decide I can walk more than 200 metres) plus no longer being eligible for a Motability vehicle.  That is a massive loss if you're struggling to survive on benefits or rely on the Motability scheme to be able to run a suitable car and retain your independence.

Iain Duncan Smith wants disabled people to find jobs and work their way out of poverty.  He doesn't seem to appreciate that not everyone is capable of working, even with reasonable adjustments.  You might presume I can work because I wrote this blog post but it has taken me several days of short sessions at the computer to compose this.  If I were writing professionally I would be expected to produce this every single day, but even if I worked from home there is no way I could do that 5 days a week to an acceptable standard.

The government believe that working can help people with chronic illnesses but for people like me the physical stress and effort would make my condition deteriorate to the point where I would be bed bound and have very little quality of life.  I struggle with just looking after myself, never mind working enough hours to earn a living wage.  Leaving the house just to go to the shop on my mobility scooter can leave me so fatigued I can't do anything for a few hours and there are days when I'm not capable of doing anything at all - and that's when I'm well!  If I get a virus or an infection which can happen up to 6 times a year, then I could be bed bound for up to a month.  Just getting out of bed in a morning is work, never mind having a shower, getting dressed or doing a few basic household tasks.

This leaves me and thousands of other disabled people in a very difficult position.  On the surface we appear too well to need financial or practical support but we are too sick and disabled to function without support.

What we need is understanding and support so we can manage our conditions and live a happy and productive life.

What we don't need is constant scrutiny, sanctions and the withdrawal of benefits and support services by people who have no understanding of what it's like to live with a long term illness or disability.  We don't think we're entitled, we don't want to be benefits scroungers but with the right kind of help and support some of us might just surprise you and actually become that awe inspiring Schrödinger's cripple.

Disability and the high cost of living.

We've read the newspaper stories and watched them on TV - the benefits scroungers.  They haven't done a days work in their life, they all have a big TV and get everything for free, right?

I am constantly surprised by people who assume that because I use a wheelchair I don't have to pay for anything.  It couldn't be further from the truth!

But the NHS is free!

Yes, up to a point, but there are some things that you still have to pay for.

To qualify for free prescriptions you have to be on a means tested benefit, such as Job Seekers Allowance, have a medical condition that exempts you such as a thyroid condition or be completely housebound. You can find out more here: Help With Health Costs.

My husband works full time so have to pay full price for my prescriptions.  At £8.20 each it would cost me around £600 a year for my medications! Luckily there is another option for me - a pre-payment certificate.  It costs £104 a year, I pay for it is 10 instalments of £10.40 and it covers the cost of all my prescriptions.  It works out a lot cheaper but it's still a cost that health non-disabled people don't have to pay.  It also doesn't cover the costs of the supplements and vitamins that have been recommended to me by my specialists which set me back around £400 a year.


Because I am not exempt from paying prescriptions charges I also have to pay for other medical treatments too.  I have Sjogren's Syndrome and the symptoms can cause dental problems.  I have to pay for two dental check-ups a year plus I usually have to have some work done. In the past 12 months I have spent over £250 on dental work.  I look after my teeth very well but the problems are unavoidable due to the complications of Sjogren's.  Just another perk of being chronically ill.

One of the possible side effects of taking Hydroxychloroquine is potential problems with eyesight so it is vitally important that I see an optician once a year to make sure the drug is not damaging my eyes. That's another £15 a year plus the cost of a new pair of glasses if my prescription has changed, which cost around £50 for a budget pair of frames.

I live in the East Midlands and there aren't many local consultants with the expertise to deal with my health problems.  That means I have to travel to London to see my doctors.  I don't qualify for free hospital transport and I can't leave the house on my own so that means my husband has to take a day off work and either drive us to London or go with me on the train. Depending how far in advance I can book the train tickets they can cost anything between £70 and £150, which is a pretty big cost for attending a hospital appointment.  Sometimes if the appointment is scheduled for very early in the morning we have to travel the night before and stay in a hotel, which can cost £60+ a night.  Four trips to London a year can be around £500 - all for the sake of managing my complex conditions.

Physio therapy is also another cost.  It is usual practice for the NHS to allow 6 sessions on one body part before the patient is discharged - which for chronic conditions is no where near enough.  After 6 sessions you are discharged back to the care of your GP and if you still need help you have to get re-referred and wait anywhere from a few weeks to a few months for your next 6 sessions.  Private physio is the only feasible option for some people but at a cost of around £40-£50 a session it can be prohibitively expensive.

But you get a wheelchair for free!

Yes, I have an NHS wheelchair but that does not meet all of my mobility needs.  I'm not sure what picture comes into your head when you think of a wheelchair, perhaps something lightweight and sporty like wheelchair basketball players use?  The kind that Wheelchair Services usually hand out are the big heavy old fashioned looking chairs that you'd find pensioners in nursing homes sitting in.  They are heavy, they are difficult to propel even if you are relatively fit.  I can't push my chair more than a few feet, and that's indoors on a smooth, flat surface.  They are also difficult to fit in a car so going anywhere is a challenge plus it's difficult coming to terms with the loss of independence if you need someone to push you everywhere.


If you don't like your NHS chair there are other options, but that will cost you extra.  There is the voucher scheme where they will give you a voucher for the value of a standard NHS chair and you can pick whichever chair you want but you have to pay the difference and you can only use the voucher at certain approved suppliers.  You can buy your own wheelchair but something ultra lightweight and sporty can set you back up to £4,000!


If you can't propel a wheelchair yourself  there is always the option of a powerchair but don't expect to get one on the NHS unless you are a full time wheelchair user and it is impossible for you to self propel.  And even if you do get a powerchair on the NHS they will only usually provide one for indoor use.  If you want to move around independently outdoors you will have to buy your own suitable powerchair and than can cost between £2,000 and £8,000.

Mobility scooters are a slightly cheaper option.  Starting at around £500 you can buy a car boot model which will dismantle and fit in a car boot.  These are great for nipping around the supermarket but they have limited battery life and are not great on pavements or uneven surfaces.  Larger scooters can cope with most terrains but they cost more, up to £8,000 and of course they won't fit in your car so you would need a van or a trailer if you wanted to use it away from home.

If you can't afford those prices you can lease a chair or scooter through the Motability scheme.  For a £100 deposit you can use between £20 and £55 of your weekly Enhanced Mobility Component of PIP or Higher Rate Mobility DLA allowance, but only if you're not using it to lease a car.

But you get a car for free!

You can get a car but it's not free.  If you apply for a Motability car you get it instead of your mobility payment so it costs you £57.45 a week.  The government has made it harder for people to do this by changing the eligibility criteria for PIP so if you can walk more than 20 metres you're not disabled enough to get a Motability car.

Some cars also require a non-returnable advance payment. The smallest, most basic cars have a zero advance payment but if you want something big enough to put your wheelchair or scooter in you may have to pay up to £9,000 up front.

But you get house adaptations and equipment for free!

No, not unless you're on means tested benefits.  There are grants available if you meet the eligibility criteria but if you have savings or a partner who works then you will have to fund adaptations and equipment yourself.  I have been assessed as needing a stair lift but because my husband works full time the OT told me it would cost £9,000 which is well beyond my means, so when I'm having a bad day I have to crawl up and down the stairs.  

I also need a bath lift.  I was offered one on loan but I turned it down as it did not meet my needs.  The OT recommended a different kind, but their department didn't supply them so I'd have to buy my own, at a cost of around £600.  I was also expected to purchase other aids such as an Easi-reach grabber and suction cup grab rails as the walls in my house were not suitable for the permanent ones the OT department supply.


So as you can see having a disability isn't the free meal ticket that some people make it out to be. Disability benefits such as PIP are there to help people with the added cost of living with a disability and those costs can run into thousands of pounds.  

There will always be people who would rather sit at home watching their big TV, but when you think about how it would cost them tens of thousands of pounds for an electric wheelchair and an accessible vehicle just to allow them to get out of the house then maybe £500 for a TV that provides them with entertainment and a window to the world outside then it doesn't seem quite so extravagant after all.