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Personal Assistants or Agency Staff: My Journey to Gaining Independence

hdeakinhdeakin Member Posts: 92 Pioneering
edited March 16 in Guest blogs
Hannah (29) has been disabled since an injury at the age of 14, which left her with Complex Regional Pain syndrome and a range of secondary illnesses and complications. She’s a disability and lifestyle blogger and started her blog Hannah’s Hope in 2018. She’s passionate about making a difference, changing perceptions and promoting equality.

The start of care in the community

I have depended on care in the community ever since home leave from hospital at the age of 16. However, my care was on a more permanent basis after I came home at the age of 21. This was after spending 4 years in hospital and 1.5 years in a neurological unit and care home.

Initially, I had continuing health care which included a 24-hour nurse and carer from an agency. I had high medical needs and was dependent on then for every aspect of care and life in general. This was hard, as a teenager and young adult I should have been gaining independence, whereas I had lost all independence and virtually had none.

Then, as my needs reduced, I just had agency carers during the day and night. After being reassessed and deemed no longer eligible for continuing health care I was transferred to social care. Under social care, I have direct payments and employ my own Personal Assistants (PAs). It has been like this for 5 years, with a team of PAs who do regular day and night shifts each week.

Switching to Personal Assistants

Employing PAs works well for me and us as a family, there is continuity and my PAs know how to look after me. There is also a degree of flexibility. In contrast, with agency care sometimes a carer would come one day and never be seen again. I would spend the whole day explaining what I needed and how to do things to avoid added pain. This was physically exhausting and I only achieved half as much as I wanted to. Some weeks I could have several new people and was constantly going through this process. Having PAs also cuts out the middleman, as you can talk directly with the person rather than through the agency.

On the downside it can be tricky to find the right support. You are in charge which has its pros and cons. Sometimes I have found this difficult. They are helping me with personal care, which is so intimate, yet you need to hold the authority of being the boss. Furthermore, you want to get on with them, being a friend whilst professional as well. It is a really difficult relationship. Sometimes I feel that I don't have the authority as much because of my age. I am in my 20’s and they are older than me.

 Hannah is sat in her wheelchair and is being passed a cup of tea

There is a lot of work involved employing PAs from advertising, recording hours, submitting them to the payroll company, paying PAs, pensions, arranging holiday cover to name a few. With an agency they cover all of these things. This may sound easier, but in reality it was very stressful.

My PAs help me achieve a better quality of life, they support me with personal care, physiotherapy and transfers to name a few.

My support is varied and does involve my family

I also get a huge amount of support from my parents. Particularly, my mum. People often ask, what does she do, you have PAs that look after you? Well, she actually does an awful lot! From looking after me when I don't have a PA, to helping my PA on the several days a week when I need the support of two people. The list could be a page long: taking me to physiotherapy, swimming, work experience, hydrotherapy, oxygen therapy, hospital appointments. Let’s not forget seeing my friends. There also are mountains of emails and administration jobs which include PA payroll, ordering my medications, washing my clothes, cooking meals, arranging services for equipment and many other battles.

My Dad pumps up my wheelchair tyres as well as maintaining my powerchair and manual chair. He also maintains and washes my wheelchair accessible vehicle to name a few. I am so lucky to have amazing parents, who are so supportive and do so much for me.

Do you receive any care or support in the community? Do you employ your own PAs? How do you find them? Let us know in the comments below!

Replies

  • pollyanna1052pollyanna1052 Member Posts: 1,942 Disability Gamechanger
    Hi, great to read how much good care you receive/need.

    I have been disabled 22 years and also need quite a lot of care.

    Initially my hubby did it all.....for 11 years actually.

    He has RA and I could see the toll of my everyday care was taking on him.

    I persuaded him to let me get outside carers. He wasn't chuffed, as a typical stubborn man!

    So in the last 9 years, I`ve had several carers. One is the original PA and we are like sisters.
    She does 16 hours and 2 sleepovers. She gets me up, puts me to bed, toilets, showers, dresses me and takes me out. We have some great laughs and have also shared her`s and my down times....some quite serious. We`ll pull each other through.

    I also have an agency....new to me...I have 3 regular girls and a couple more,  not so often. It does take time to get them used to how I like things done.

    It also takes a while to become confident in their abilities. Their calls are fairly certain, but can change suddenly....this makes me anxious.

    I would refer for all my carers to be PAs and not agency workers, but the agency does take care of things I`d rather not.

    One thing I would change if I ruled the world...carers would get the pay rise they need and deserve!

    Pollsx
  • hdeakinhdeakin Member Posts: 92 Pioneering
    Hi @pollyanna1052, thank you. I am sorry to hear your husband has RA. I am glad you have a great PA. It makes such a difference. Especially with such personal care and with them being so involved in your life. That is nice that you have supported each other through. I can understand if the agency carers calls change it makes you anxious. Very true- there are advantages and disadvantages! I totally agree with you about them getting a pay rise :) x
  • Ami2301Ami2301 Community champion Posts: 6,440 Disability Gamechanger
    Very insightful @hdeakin I've been contemplating about having a PA for a few months now, however the experience I had from continuing care once discharged from rehab, has deterred me from looking further afield.
    Community Champion
    Disability Gamechanger - 2019
  • pollyanna1052pollyanna1052 Member Posts: 1,942 Disability Gamechanger
    Ami2301 said:
    Very insightful @hdeakin I've been contemplating about having a PA for a few months now, however the experience I had from continuing care once discharged from rehab, has deterred me from looking further afield.

    Hi Ami, if you feel you need carers or a PA, don't be put off and struggle with things. I got my great PA by a personal recommendation. Ask around.Pollsx
  • pollyanna1052pollyanna1052 Member Posts: 1,942 Disability Gamechanger
    hdeakin said:
    Hi @pollyanna1052, thank you. I am sorry to hear your husband has RA. I am glad you have a great PA. It makes such a difference. Especially with such personal care and with them being so involved in your life. That is nice that you have supported each other through. I can understand if the agency carers calls change it makes you anxious. Very true- there are advantages and disadvantages! I totally agree with you about them getting a pay rise :) x

    Thankyou x
  • hdeakinhdeakin Member Posts: 92 Pioneering
    Thank you @Ami2301. I am very happy to answer any questions you have regarding getting a PA. I am sorry to hear you had a bad experience with continuing care once you were discharged from rehab. I know what you mean sometimes these bad experiences put us off, but I agree with @pollyanna1052 if you think it would help don't struggle without. If I can help with anything please ask as I am very happy to help 😊 x
  • AerialishAerialish Member Posts: 1 Listener
    edited March 23
    Hi H,

    As a former single user PA, I must say I have always considered it a highly enlightening experience in comparison to often rushed agency rota. As a PA, you have the chance to get to know your employer (boss, OK, boss sounds better) very well and individualise the support based on their needs and personal preferences. This can sometimes be very challenging to both sides but remaining professional helps build that bridge. In the end of the day, a PA wants their boss to be happy and fulfilled and in return, their job becomes a part of someone's life. As a PA you learn a lot not only about the varieties of care plans but also about everyday victories and struggles of a disabled person that you will never hear about in any other way. You witness family and friendship bonds you never knew existed and strength you never imagined someone could have. It's a great job. 

    Best wishes,

    I.
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,284 Scope community team
    Welcome to the community @Aerialish and thank you for the insight. :)
    Community Partner
    Scope
  • hdeakinhdeakin Member Posts: 92 Pioneering
    Hi @Aerialish, welcome to the community and thank you for your comments. Yes I totally agree, it is so much better than a rushed agency visit. Yes it is so true is more than a just a job. You are part of someones life and making a difference to their life. I am glad you have enjoyed the job. You sound like a lovely PA to have 😊
  • Abdi_ScopeAbdi_Scope DPO, Scope Posts: 236 Pioneering
    edited March 27
    @hdeakin and others - What makes a good PA in your view?


  • hdeakinhdeakin Member Posts: 92 Pioneering
    Hi @Abdi_Scope , a good question. In my opinion someone that is kind, caring, willing to learn and help me achieve. Someone who is respectful especially considering sometimes they need to help with quite personal things and their place of work is your house. Someone who appreciates that although it is a job, this is your life they are part.

    I am really interested to see what others think 😊
  • Abdi_ScopeAbdi_Scope DPO, Scope Posts: 236 Pioneering
    @hedeakin Me too - I hope others can give their comments from experience
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,284 Scope community team
    A really interesting point! I agree with you there @hdeakin. It is often about getting the balance between being professional but having a friendship dynamic as well.
    Community Partner
    Scope
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