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The social care sector in England is in crisis. Thousands are left without the vital care they need, while others who are lucky enough to be deemed eligible are forced to navigate a broken system providing insufficient and inconsistent care. In the following post I detail my own personal experiences, while highlighting the problems with the underfunded and undervalued care system in England.

Loss of independence

I’m often asked “What is the hardest thing about living with Severe ME – what has been the toughest adjustment you have had to make?” 

It’s not easy picking just one thing. My life turned upside down when my health crashed and I became bedbound. There’s the constant pain. The loss of my old self and everything I used to enjoy. The hypersensitivity which causes so much isolation. The disbelief I experience from doctors, acquaintances and the general public. The judgments: “you’re just lazy, and faking it for attention“. The deterioration of my cognitive abilities – brain fog is a bitch. The Boredom! The constant nagging feelings of guilt and the ongoing grief process. Losing my ability to work and the financial burden that placed on my marriage. Alongside fighting for recognition of an illness that is often ignored and deeply misunderstood.

But for me personally, the hardest thing to admit, and come to terms with, was accepting that I was no longer able to care for myself. It was the loss of independence that came with the realisation that I needed to rely on others, and the constant struggle to access the care I so desperately need. Having strangers walk into my home is something that, even 6 years later, I struggle with. 

Accessing any domiciliary care in England is a frustrating and time consuming process. But finding adequate care that meets your needs and is consistent, seems impossible. I have had to fight every step of the way and it’s exhausting! 

I have now accepted that I need to rely on others for my care needs, but it wasn’t an easy thought process. I fought for months, struggling everyday as my health rapidly deteriorated. But the care I receive needs to be consistent. I have specific needs that, for some reason my care agency seems unable, or unwilling to meet. Things have got particularly bad over the past two years and I’m at breaking point. Here’s my story:

Admitting I needed help

About 7 years ago my health severely deteriorated and I became pretty much bedbound. But this happened so suddenly it took time for me to acknowledge how ill I was, and to admit I needed help. After struggling for months, and with my weight dangerously low, I was at breaking point mentally and physically. I was unable to prepare food for myself, and as I spent the majority of the day and night on my own, I knew things had to change. What I didn’t know was how to change things. 

I was in my late thirties and care isn’t something you should have to think about – it’s certainly not something that’s spoken about. So I had no idea there was even help out there for people like me. It wasn’t until my sister came to visit and saw how ill I was, that I began the process of accessing care. She simply asked: “Have you been seen by an occupational therapist (OT), and have your care needs been assessed?” I didn’t know this was even an option, but I spoke to my GP who was happy to refer me. 

To begin with I was seen by an NHS OT, but she wasn’t able to provide me with everything I needed. I was then visited by a council OT who was great. She referred me for a hospital bed, and we also put in an application for our bathroom to be converted into a wet room, due to the fact I was too weak to get in and out of the bath. She also recommended I contact Adult social services (or ASS as I like to call them) to discuss my care needs. 

Applying for domiciliary care

I will be honest, I waited a few more months before I contacted adult social services – I really didn’t want to admit I needed care, and the whole process scared me a little. In the end I called them in tears – I was in crisis and I needed help. Nothing prepared me for the exhausting and frustrating process – I had no idea what lay ahead of me.

They acted immediately as they could see I was at risk. They put in place emergency, but temporary care. I had to go through a long interview to assess my care needs and to carry out a risk assessment on my home. That first month of care was exhausting. I had a carer visit twice a day, but it was a different person each visit. Not only did I have to explain my needs each time, but I had to get used to a new stranger entering my home everyday. 

We installed a key safe because I was unable to open the front door myself. This did help, but it filled me with anxiety. What if someone used the key safe to burgle us? And I really couldn’t get used to strangers (care workers) just letting themselves in. It was really hard for my husband to adjust too. 

After a month I was reassessed again. The agency they had placed me with only provided temporary care. I was then placed with the only agency available at the time to cover the care I needed – I wasn’t given a choice. And yet again I had to go through the exhausting care needs and risk assessment interview. And when the care commenced with the new agency, I had to get used to a whole new set of strangers entering my home – yet again it was someone new every time. 

Inconsistent and inadequate care

After a few months I realised this wasn’t going to work. I desperately needed consistency. Why couldn’t I have the same carers regularly? It would mean they would be aware of my care needs, I wouldn’t have to explain myself every time, and I could build a relationship with them. After some exhausting calls with ASS, and yet another assessment, finally consistent care was agreed and arranged. I would have one care worker cover the majority of my calls, and a couple of other carers covering the remainder. 

The difference this made to my health was astounding. Finally I could work on resting, eating and improving my health. David, my regular care worker, became more like a friend than a carer, and my mental health improved too. But sadly this situation didn’t last. 

Along with regular assessments which were exhausting, my care started to change. David was frequently being taken off my calls and placed in other areas, multiple times a week. In his place, new carers who were strangers to me were providing my care. Changes were made to my rota last minute, without warning. And often my calls were cancelled last minute because the agency couldn’t cover them. 

Let me try to explain why new carers, especially without warning, are so distressing and exhausting for me, and why consistency of care is vital:

  • When you live with severe ME routine is vital. New situations are exhausting, and sudden changes are difficult to deal with, causing unnecessary distress and anxiety
  • Hypersensitivity: I’m hypersensitive to noise, light, smells etc. New carers do not know this and their actions cause me pain
  • I have multiple intolerances and allergies: I react quite badly to perfumes and scented deodorants. On a number of occasions new carers have brought these chemicals into my home which has triggered migraines, often lasting for days
  • I have multiple food intolerances: I have a very strict diet, and although I have a carers handbook detailing all this, on a number of occasions new carers have made my porridge using milk, not water – I have a lactose intolerance
  • Explaining what needs doing each time to new carers is exhausting. I also struggle to communicate at times
  • Having strangers walk into my home causes me anxiety. If this happens without warning I often experience panic attacks 
  • It’s important for me to build a relationship with my carers. I need to be able to trust them not to cause me harm in my own safe environment
  • The timing of my care calls is also important. When I have regular carers we set up regular times, even if my rota says differently. I cannot have this dialogue in advance with new carers, and not knowing when they are going to turn up causes anxiety, and I never know when I’m going to be able to eat
  • Having said all that, isn’t consistency better for everyone, the people in need and the care workers? 

Addressing the problems – no accountability 

I tried to address these problems first directly with my care agency, and then with ASS. I exchanged multiple phone calls and emails over a three-year period – but I achieved nothing. I was ignored and abandoned, and made to feel like a nuisance. My care needs hadn’t changed, my care plan hadn’t changed. Yet the care I was receiving had, and it wasn’t sufficient for my needs – in fact it was making my health worse. And the frustrating part? Although some of my care is subsidised, I have to contribute to my care costs. So I am paying for a service which is meant to make life easier for me, and instead it’s making me ill. 

There seems to be no accountability, and ironically, no one cares. No one cares that my health is suffering. I know I’m very lucky to even have access to care, a lot of people in my situation have been denied it – there is a social care crisis in England. 

This frustrating situation has been going on for 3 years now and it’s getting worse as time goes by. I’m left with an impossible decision. Do I continue to put up with care which is making my health worse or do I start the unknown, unpredictable, exhausting and complicated process of employing a care worker directly myself, or changing care agency?

I wasn’t given a choice when it came to what care agency I was placed with. But from what I hear from talking to others, is that my experiences are quite common. Care agencies are in a position where they can pretty much do as they please. The options available to local councils are limited, and due to understaffing and underfunding, problems are not being addressed when they arise. 

I do need to mention at this point that, although I have had many frustrating interactions with the office and management staff at the care agency providing my care, the majority of care workers I have been in contact with have been professional and sympathetic to my needs. But sadly these carers are underpaid and undervalued, and there continues to be high turnover of staff. 

And it’s quite obvious that the social care system is not designed for people like me. It’s set up to provide care for the elderly and it cannot accommodate the complex needs of people like myself with multiple chronic illnesses. 

Assessing my options

So with all the frustrations around my current care agency, and the inadequacies, what are my options? Basically there are three options available: 

  • Ask to be placed with another care agency
  • Employ a personal assistant (carer) myself directly
  • Leave things as they are and just put up with it

Each option brings its own challenges – it’s not a simple process. 

Changing care agency would mean going through the exhausting reassessment process again including a risk assessment. It would also mean getting to know a whole new set of care workers – more strangers entering my home. And after all that stress, there is no guarantee that the care I receive will be any better than my current situation. 

And as for employing someone direct myself, the process couldn’t be more complicated:

  • You have to register as an employer
  • Advertise for a personal assistant, interview them and carry out DBS checks (You will probably have to employ more than one PA to cover all the hours needed)
  • Compile an employment contract
  • Provide a pension
  • Calculate and pay wages, tax, holiday and sick pay
  • Organise timesheets and deal with any disputes
  • Arrange cover for holiday and sick days
  • Take out liability insurance
  • Give notice to your current agency (28 days)

All this while living with a debilitating chronic illness which severely limits my mental activity levels, and causes brain fog. There is help and advice available from my local council under the Direct Payment Service, but it’s still an exhausting and complicated process which leaves my head spinning just thinking about it. 

It seems that when you are at your most vulnerable, and least able to fight your corner, you have to do just that. How can anyone in my situation be expected to navigate this system? The process desperately needs to be simplified to give people a realistic alternative to the often inadequate care provided by care agencies.

The social care system is in place to assist people, like myself, who are vulnerable and in need. It is supposed to make my life easier, yet it has caused nothing but stress and it’s damaging my health. I can safely say, without exaggeration, that the issues with my care provider cause me more stress than anything else in my life, including my actual chronic ill-health. 

The social care crisis in England

Adult social care in England needs fixing – and has done for decades. Increasing numbers of people are unable to access social care and care providers are at risk of collapse. Yet the UK government continues to duck reform, and people and their families continue to suffer unnecessarily. Inadequate provisions often leaves the burden of care on family members, who provide vital services with little reward. The stress this causes on relationships and the financial cost to families can be immense. 

Since 2010, £7.7bn had been cut from adult social care budgets in England. Yet demand has grown, the result of longer lifespans and a growing population. People in need of care continue to fall through the cracks of a social care system riddled with holes. 

I know I am lucky to receive care at all, even if it’s often inadequate and I have to pay towards the cost. Many people in my situation simply cannot access care, or afford it. Due to funding cuts local authorities have increasingly prioritised funding for people with the most severe care needs. Currently the system struggles to provide enough high-quality care for those who are eligible. 

Adult social care employs 1.49 million people in England. Pay is low – in fact, many don’t even receive minimum wage as they are not paid for their travel time between home visits. Insecurity is rife. One quarter of adult social care workers are on zero-hours contracts, rising to 50 per cent among domiciliary care workers. So unsurprisingly, providers are struggling to recruit and retain workers.

What does the future hold?

Where does this leave me now? Do I continue to struggle with inadequate care, and incompetence while my health suffers? Or do I start the complicated and unknown journey of employing direct care with all the potential pitfalls? I desperately need things to change but there isn’t an easy solution. Why is it that when we are at our most vulnerable we have to fight the hardest for vital services? I know I am not alone with my struggles. 

Many people would assume that anyone in need would be able to access adequate care, but this is just not the case. Thousands are left without the care they need, while the lucky ones who are deemed eligible have to make do with broken system providing insufficient and inconsistent care. 

I cannot see things improving in the short term. The Conservative government does not prioritise health and social care, and they refuse to adequately fund a sector that is in crisis. The population continues to age, yet social care funding is being cut.

I wish I could be more optimistic about the future of social care in England, but all the signs point to increased demand with no funding, which will only extend the crisis, leaving more people without vital help they so desperately need.

I would love to end this post with some tips on how to access domiciliary care in England, but I’m afraid I’m not equipped to give that advice. I’m still trying to figure it out myself. I have done everything in my power to address the problems I have faced, but it’s been like hitting my head against a brick wall. If you have any advice, please comment below.

What have been your experiences with accessing care?

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