We’ve all heard of the “postcode lottery” when it comes to health service provision, but until I moved house in November 2015, I had no idea that moving just seven miles down the road would create such huge problems in arranging personal care.
Since 2008, I’ve used Direct Payments from social services to pay for personal care from local agencies and I was lucky enough to find great care workers who met my needs in a flexible way that suited my lifestyle, all within the agreed budget determined by my care manager.
In November 2015, everything changed when my family and I moved house. This is where the problems began. I had moved from a seaside retirement town, living on a main road with good public transport links and a choice of care agencies, to the countryside where it emerged I would struggle to find the support I needed.
Before moving, I attempted to find a suitable care company, so that the transition between homes would be as stress free as possible and I made a list of agencies that stated they operated in the local area, feeling quite optimistic when neighbouring towns and villages were listed. But when it came to contacting this companies and giving them my address, I was left feeling helpless when company after company said they did not serve my area.
After ringing around six local agencies and having no success, I was left with only a handful of care companies. There was no choice by this point, no way to determine if an agency sounded like a good fit for me and I was starting to feel like I had little control in my care provision. I was desperate.
Agencies I spoke to that did serve my area couldn’t meet my needs, telling me that I could have a morning call but it would have to be 30 mins (instead of my required 90 mins) and at the late start time of 11am (rather than 9:30am). Not only would this have meant a wasted morning, but it meant I would have to choose between using the time to get washed or dressed – not both.
With help from my family, I was eventually able to find a newly established agency that could provide the care I needed and could start two weeks after we moved. Luckily they have been a good company – which is a relief because by that point I had run out of options.
Unfortunately this wasn’t the end of the battle. The new care company’s hourly rate was more expensive than the agency I’d used previously and after contacting social services about a financial reassessment to cover the increase, they refused to increase my Direct Payments. In their eyes, even after I had explained the situation, I had “chosen” a more expensive company and it was down to me to fund the difference in cost – something I was unable to do. For months I reiterated that this was not a “choice” I had made willingly, but a necessity. By then I had called approximately 12 agencies.
What transpired was a year-long fight to have my needs met by my Direct Payments and a lack of understanding from social services about the difficulties I had in finding suitable care provision. After telling them I had exhausted all known options, they sent me a list of companies to ring (the majority of which I had already contacted) but I faced the same issues – agencies that were only able to visit me in unsuitable hours or with male carers. I was even told to contact one agency, who then informed me they only provide care for those aged 65 and over. Being 28, I had a long wait!
In January 2017 and after months of phone calls, I finally had confirmation that my funding would be increased to meet my needs, but the process has been exhausting and frustrating in ways that could have been avoided.
Using Direct Payments should mean choice, independence and control but without suitable agencies available I was trapped. Social services were unable to recognise the difficulties I was having finding care in a rural, cut-off area and they couldn’t recommend in-budget agencies that could meet my needs either.
Even though I am happy with my current care provider and my story has had a happy ending, the stress caused by the thought of not being able to access the care I needed was an unnecessary burden to my life.
In future I hope that there is a better understanding about how location can limit access to care providers and restricts choice. Social services need to offer direct help in making sure that disabled and older people can find a suitable care agency even in rural areas.
By Chloe Timms