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Managing Your Care

‘Who Cares?’ – Sanjeev talks care agency pros & cons

My name is Sanjeev and I am a journalist, producer, and development worker for Pathfinders, with Duchenne Muscular Dystrophy. Like many with a neuromuscular condition, I rely on other people like carers, personal assistants, family, and friends to go about my regular day whether going out or staying in, as well as for personal care. For my care, I use a mix of PAs and a care agency as well as my family. These are the pros and cons I’ve found from my experience with agencies

Pro 1 – it’s easier for cover to be arranged

A key strength is a fact that if your care team has a sickness, or if people become ill long term then your care agency should be able to cover the shifts that you need. This is because while most people will have an assigned care team to do regular shifts, agencies should be able to bring people in from elsewhere if needed. Even though you might not know them it’s better than nothing, especially if you need help with getting out of bed in the morning and going out and about.

Con 1 – it’s more expensive than PA’s

When you receive care you must try and get the most out of the hours that you are allocated from your council area. In some areas, you are allocated a fixed budget, meaning that you have access to fewer care hours if you use a more expensive care agency. The cost of a PA varies nationally but can be about £12.50 per hour, including national insurance and payroll. A major disadvantage of agencies is that they are considerably more expensive, often £16-£20 – or even more, which can mean that you have access to fewer care hours.

Pro 2 – you don’t need to advertise for care vacancies

Another advantage of a care agency is that you don’t need to personally advertise for carers because the agency typically takes care of all that for you (although this isn’t always the case). They also usually cover PVG/DBS checks, training, and shadow shifts before starting to put support in place. This does take a considerable amount of weight off your shoulders, knowing that you don’t need to sort any of this. Also, because of this, you don’t need to go through the hassle and time of interviewing potential PAs – which more often than not takes a long time.

Con 2 – you don’t always get drivers

Because you don’t have as much control over who comes in to support you, you run the risk of not being assigned a driver. Many car insurance packages require all drivers to be over 25. From experience, this has been annoying, because I rely on using my car for transport, as a lot of public transport is difficult for me to access.

Pro and con 3 – paperwork

A pro and a con of using care agencies is paperwork. From a personal point of view, it can sometimes be frustrating because of the time it takes, and the number of checks needed for the process, especially documentation at the end of shifts, and risk assessments. I agree it’s necessary on some occasions, like when on holiday or using public transport, but not for a regular trip out for a walk, going to the cinema, seeing friends, etc. However, for those with different disabilities with more complex needs, then I can see why this is important for safety purposes. Paperwork can also help when looking for additional supported hours from social work because it provides evidence of the more support needed.

It can be difficult when getting new medication from doctors, especially if everything has to be recorded. If this is the case, make sure your doctor knows that the labelling on the medication boxes has to be completely accurate, or agency staff may be unable to give medication, which can be a significant issue for people who live alone.

Con 4 – You might not have control over who supports you

It might seem strange, but you might not have a choice in who supports you. It just depends on who’s in the team in your specific area. This can sometimes be a problem if you don’t get on with those supporting you, which can lead to a hostile/uncomfortable environment. If that happens, make sure you try to get this sorted – and be comfortable with making complaints or trying to change the company if need be. In my experience, I’ve generally gotten on with the majority and I trust the people around me, which is the most important thing in my opinion.

Conclusion

In conclusion, I think there are a few things to take into consideration when looking into care agencies and their strengths and weaknesses. For example, cover, costs, advertising, control of support, and drivers.
I like a mix of care agencies, PAs, and using family to cover my support needs. It’s a happy medium that always me to get the most out of my care package. It allows me to have cover when I need it and gives me more control over who comes in.

Everyone is different so make sure you make the most out of your package and do what is right for you only!

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