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Guest Post: Accessing care agencies

loopysosloopysos Posts: 7Member Listener
edited January 9 in Guest blogs

@loopysos writes a lifestyle blog about chronic illness, in this post she talks through her experience of accessing care agencies.

The things that go through your head are very distraught, daunting thoughts that you need a carer, but how, where, what? 

I found myself lost, being impatient at hospital, being discharged and I couldn't even go to the toilet without help, yet you’re expected to just “get on with it.” I felt there was no guidance and I wasn't coping, so for me I knew it was time to have a carer.

The first steps are realising you need help, there is no shame at all, it doesn’t make you less of a person, you’re getting help to get your life back, to some degree. Be open, for me, having fibromyalgia, it felt harder because people don’t understand it, you have widespread chronic pain but it’s not life threatening. At my young age, I had things going against me. Please don’t let this hinder you.

Lucy with a question mark

Accepting help

Now, how do you get help? This is where I was lost, because help wasn’t handed to me. I tried asking my GP, they couldn’t help, so looking around someone suggested calling my local council. You go through adult social services/occupational therapist/disabilities, from there they advise you. Be open and honest and from there, the care manager sets your appointment that you may have some wait for so be patient. 

The meeting and assessment is there to help them figure out what help you need including finances (if you’re on benefits). You will be asked a lot of questions so they can fully understand your situation.

Once assessed

After my assessment, I was then passed onto direct payment, they are the one’s who sort out the finance side of things. This is where it gets technical, it’ll be decided by the assessment care management team at the council if you will pay for your own care or your local council.

Passed all the steps

Now the actual care. You may decide for your family to care for you full time, that’s fine. For me I wanted a carer. The next steps, I looked for a carer myself, put an ad out with the help of Direct Payment, due to the poor response and last minute time-wasters, I was very frustrated, I went with care agencies. I sought help and advice from Direct Payment who gave me sound advice for interviewing potential carers.

The advice was:

  • Have a notebook with questions prepared.
  • Don’t be afraid to ask questions like”how long have you been running?”
  • Do you feel comfortable - important as your care is in their hands, you need to be able to talk to them.
  • Does it feel clinical? For me I want my carer to be able to hold a conversation with me, it’s about you and what you want.

Once you have a carer, if you feel uncomfortable or mistreated, tell the office and don’t suffer in silence. Also, make sure if you are able, that you are not being overcharged, if you’re unable please try and have someone check.

Please remember you do not need to suffer in silence, don’t let your invisible illness discourage you, I know it’s hard, trust me, I know. It’s been a fight for me. Don’t be afraid to seek help. Forums and support groups are great, always ask and look around, I truly hope this post helps someone.


Do you use care agencies? Is finding a carer a difficult experience? What tips would you give to ensure you receive the best care? Let us know your thoughts.

Comments

  • Susan ButlerSusan Butler Posts: 3Member Listener
    I am so glad that you managed to sort out how to get the care you need as I know from experience that lots of people have no idea how and flounder for a long time trying to cope till they reach a crisis point.  I too have fibromyalgia and Osteoarthritis amongst other illnesses.  Fibromyalgia was originally my principle diagnosis and as it came on all of a sudden whilst I had been working as a Carer in the Community and latterly a Support Worker, I was in the fortunate position of knowing that I could refer myself to Social Services. Now I think it goes through the County Council first as you pointed out.  It is so important to get that message out to people so that they can take charge of the care they need by getting assessed.  For the first 10 years or so I had my care provided for me, after being assessed, by the Care Agency arranged by the Social Worker and also had adaptations and equipment that I needed sorted out for me by the Occupational Therapist from Social Services.  I became very unhappy about the way the care agency dealt with any complaints I made about the carers not turning up regularly or at weekends being told by the agency that they could only give me a carer for half of the time if at all.  I know that it has become very difficult for agencies to take on decent and reliable staff but that should not become our problem but it had.  

    I had heard about Direct Payments and decided to learn more about it so I looked online and read all I could and decided that was the way forward for me. I contacted Social Services via the County Council and discussed it with the very pleasant lady that came to see us.  At this time, my husband finally agreed to have a Carer's assessment done and he was awarded 2 hours a week to be able to go off and do anything he wanted to do without worrying about me.  So the total hours were agreed and we set up a separate bank account for the County to pay the money into so that I could pay my choice of carer that they call your Personal Assistant.  I had already chosen somebody that I already knew and trusted.  I had decided all along that I wanted to manage my own care arrangements privately.  I could have had it paid direct for me to a care agency but I was not interested after my previous experiences.  I am lucky enough to be able to deal with the paying of my PA myself and I had ensured that I had taken on a person who was Self Employed already.  This makes life much easier to manage as I just have to pay her straight into her bank account from my Direct Payment acc that I had set up.  

    I know that the agency that had been appointed to me to help me to manage the direct payments could have helped with this and even helped me to employ somebody and take care of all the details of employing them direct and paying their contributions but I liked my way better as it was simple for me to deal with.

    I can wholeheartedly recommend to anyone that they go down the Direct Payments route and employ someone yourself whether they be self employed or you employ them yourself with help of the agency that will be appointed to help you.  My care know is second to none and I am finally getting things done at the time I want and how I want it.  I get a lot more help for the same amount of time than I ever did by being sent a carer from a care agency paid directly through the County.  On top of that I happen to know the County was having to pay around £4 per hour more to employ the care agency themselves than I now get paid to employ a person myself and that leaves more money in the budget that, most of us know is getting less all the time, therefore leaving more money available for vulnerable people to get the care they need.  It's a win win situation for all concerned.  

  • anaqianaqi Posts: 16Member Listener
    @loopysos I'm glad you managed to sort out your care.  

    I have been finding it very difficult to recruit staff.  My previous PA work for me for 8 years until she retired last year.  We had a brilliant working relationship and I knew it would be difficult to replace her, but I had no idea I would still be looking 6 months on.

    As soon as my PA handed in her notice I contacted The Rowan Organisation and asked for their help in recruiting a new PA.  There was some confusion over whether they were still providing me with a support package.  I continued to pay them for their services via a Direct Debit but they had not invoiced me and Social Services told me that I couldn't use them anyway because they were no longer accredited with the local authority.  

    I wasn't happy with The Rowan so I switched to Penderels Trust, who were accredited.  A lady came out to meet me and recommended that I look for two new PAs so they could provide cover for each other if they were ill or went on holiday.  I had a 24 hour package from Social Services so that meant each PA working 12 hours a week.  I did point out that some people may not want to apply as you need to work 16 hours to get benefits like Working Tax Credits but they assured me it wouldn't be a problem.

    The adverts were placed and I had three applicants to interview.  One was great, one didn't turn up and the other way OK.  I offered both applicants the job but one immediately turned it down because they didn't realise it was only 12 hours and they needed 16 for Working Tax Credits.

    I re-advertised the job.  There were four applicants.  One only applied because her son had lost his disability benefits and she had lost her carers allowance and she needed money, two didn't turn up but thankfully the last one was great so I offered her the job.  

    I was so happy to have found two new PAs but the joy didn't last for long.  The first PA I employed told me she was resigning with immediate effect.  It was the school holidays and her child care had fallen through.  There was nothing I could do to help so I had to let her go.  I was without care for a week before my other PA could start.

    Thankfully the new PA could work some extra hours for me but I was still struggling with only 3/4 of the hours support I should have.  I continued to advertise without success.  Two people applied but they couldn't do the hours I needed.  I have three children and I need someone to work in the afternoons when they get home from school.  I also had another application from someone who lived nearly an hour away and didn't have their own car (my advert says own car essential!)

    Just before Christmas I had four people apply.  My support worker set up interviews, only one person confirmed they were coming but on the day nobody turned up.  I was really angry and upset about it.  The support worker said it happens quite a lot.

    It is so frustrating and I don't know what else I can do.  I can't use a care agency as none of the local agencies can provide the support I need with my parental responsibilities.  My support worker thinks some of the people who are applying for the job are only doing it to meet their job application quota to keep their benefits, they don't actually want to do the job which is why they don't turn up to the interview.  Another problem is I can't financially compete with the care agencies in the area.  They pay their carers between £8 and £15 an hour, I only get £9.10 an hour allowance from the local authority so the maximum I can pay is £7.50 an hour.  And I can only afford to employ each PA for 12 hours a week, which I already mentioned is under the threshold for claiming Working Tax Credit.  

    I am completely at a loss as to what to do.  Social Services can't help.  They told me to use the local authority website Notts Help Yourself.  I placed an advert on there but no-one responded.  I also checked the list of available PAs.  There is one female PA in my area and she never replied to my message.  I honestly don't know what to do.
  • loopysosloopysos Posts: 7Member Listener
    anaqi Sorry to hear you been having problems, the agencies I am with they deal with childcare, many things, not just direct personal care. It's worth looking at carer agencies again, do you have carers support office? see if they can give some guidance. But don't be afraid to ring around, or ask anyone local to you what care is good. Trust me I know it feels like when is something going to give, it will work out. 
  • anaqianaqi Posts: 16Member Listener
    The main problem is I need my PA to use their own vehicle to take me and my children to appointments and other activities outside the home.  I don't have my own transport, I can't drive and I can't use public transport or taxis.  Agencies can't provide that kind of support, plus I can't afford the rates.  I only get £9.10 an hour from social services and I can't afford to make up the difference out of my own money.  I already receive support from Penderels Trust and they don't know what else I can do.  It's a really difficult situation.
  • loopysosloopysos Posts: 7Member Listener
    anaqi Do you have social worker? or in process of being reviewed, as social worker is your best luck. Tell them you need to be assessed, you need help. As you not getting much help for care, that needs to be looked at. Explain you can't afford it, that it's not enough. 
  • anaqianaqi Posts: 16Member Listener
    I don't have a social worker.  They allocate one when it's time for my annual review and then they discharge me when it's done.  I am reluctant to contact them because every time they assess me they cut my direct payments budget.  Because I'm on direct payments they tell me it's my responsibility to recruit staff and they can't help me with that.  I already have Penderels Trust helping me it's just no-one suitable is applying for the job.
  • loopysosloopysos Posts: 7Member Listener
    anaqi How comes your direct payments doesn't help you, give you advice, or help you in right direction. Do you have carers support office in your town? perhaps try get advice from there. Someone has to take notice, does your GP help in anyway write a letter to social worker saying you need help because of this and this.
  • anaqianaqi Posts: 16Member Listener
    I'm not sure what you mean by carers support office.  I live in Nottinghamshire.  I have been on Direct Payments for 16 years.  Social Services assess my care needs, they calculate the number of hours I need to meet those needs based on their assessment, they pay £9.10 per hour allowance into a bank account which I manage and use to pay my PA and cover all the administrative costs (insurance, payroll, tax, etc).

    Because I have agreed to have Direct Payments it is my responsibility to organise my own care.  Social Services cannot help me find and employ a personal assistant, that's not their job, they just assess my needs.  

    I have to spend some of my Direct Payments on purchasing a support service.  Penderels Trust provide that service but there is only so much they can do.  I pay them to do payroll and they offer employment advice.  Penderels have advertised my job on their website and in the Job Centre, they also help me interview people and they write up contracts but they can't do anything else to help.  They can't make people apply for the job and they can't advertise the job anywhere else, that is my responsibility but advertising jobs in newspapers and on professional websites is very expensive.

    I have posted the job advert on Gumtree, Notts Help Yourself website and local job search groups on Facebook but I still haven't found anyone yet.  

    My GP can't help, it's not a medical matter.  Social Services have already assessed me as needing 24 hours of help a week, it's down to me to purchase that support with my Direct Payments money.   

    The problem is no-one wants to do the job.  It's only 12 hours a week so most applicants would need to have another job for at least 4 hours a week to be able to claim Working Tax Credit.  I can only afford to pay them £7.50 an hour, which is much less than the local care agencies pay their workers.  I need the help between 3:30 and 5:30 in the afternoons, which excludes people with kids of their own as they are busy picking them up from school.  It's not a bad job, we have a lot of fun doing baking, playing games, looking after our cats, rabbits and fish, but it's proving impossible to find someone to come work for me.

    All I can do is keep advertising and keep waiting and hope that someone suitable applies for the job soon.  
  • loopysosloopysos Posts: 7Member Listener
    anaqi For me I had the option to either find someone myself or find a carer myself. I had no luck, so had to go down carer agency option route. Is there anyone you know personally that could be your carer, or anyone that could give you recommendations. Are you on Facebook? it's worth chatting to local group who could help you out, support groups, Facebook can be great reaching out in your community. Worth a shot. 
  • anaqianaqi Posts: 16Member Listener
    I can't use a care agency (I can't afford their rates and they can't provide the support I need) so I have no option but to find my own PA.  I've been practically housebound for 20 years so I don't know many people locally.  I've already posted the link to the job application on several local jobs groups on Facebook.  I had one person interested but they never showed up for the interview.  I honestly don't know what else I can do.  Thanks anyway for the suggestions.
  • loopysosloopysos Posts: 7Member Listener
    anaqi Just know you not alone, and it's worth joining support groups on Facebook, or other social media outlets. The fight you going through right now, I know it must be hard, let your voice be heard, you talking on here, just keep reaching out on social media outlets, you never know someone could help. I am more than happy if you need someone to talk too, have moan too, truly sorry I can't be more of help. Hugs x
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