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.
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.
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 painI 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.
· 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 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.
