Many people with muscle-weakening conditions need support with ‘activities of daily living’ – whether that means getting washed and dressed, going out, or things like physiotherapy and ventilation. For some people, this is provided by family, but for many people, they get this through social care services, either funded by their local authority or the NHS.

Types of social care funding

There are two main avenues of care funding; Social Services, and Continuing Healthcare. Social services fund care for people whose needs are primarily around nutrition, personal care, dressing, and daily life, whereas Continuing Healthcare (CHC), which is NHS funded, is more for the management of medical conditions. While there are no clear-cut factors that define which care funding individuals will receive, typically people who have funding from CHC are using medical devices such as feeding tubes, catheters, and ventilators, have complicated positioning needs, or problems with skin integrity. Alternatively they might have challenging behaviours.

Trying to decide which care funding is more appropriate for you can be a long and arduous process, and often comes down to a funding battle between social services and the NHS. In England, care funded by the NHS or social services can be delivered by agencies or by personal assistants (PAs) using direct payments. In Wales, direct payments are only available for social services funded care and if you have CHC you must use a care agency. In Scotland and Northern Ireland the situation is different again, and all funding comes via social services.

Agencies and Direct Payments

When you have a care agency in place, you typically should not have to do any of the recruiting, hiring, or managing of your staff and the agency is also often responsible for training. However this means that you may not have much (or any) control over who the agency sends to provide your care. If you use direct payments to employ your own PAs instead, then it is up to you who you hire and you are in charge of training, managing, etc. This gives you a lot more choice and control, but can also be a large workload.

The Assessment Process

Whether you decide to use social services, NHS care and an agency, or direct payments, there will be an assessment process in which they look at your needs and allocate you the amount of care they believe is necessary to meet those needs. If you are going through the assessment process, it is very worthwhile having a broad and holistic view of your needs, and writing down exactly what support you need throughout your day and night. Once you have a certain amount of care allocated, it can be hard to argue for an increase, so it is important to avoid lowballing the amount of care you will need. If family or friends currently do all of your care, discuss your needs with them to ensure that you haven’t forgotten anything.

Care Agencies

With a care agency in place, any concerns you have about the care you are receiving should be reported to the care agency. If the care agency is not working for you, you are normally able to change the care agency, but this may involve lots of discussion with your funders in terms of selecting an appropriate agency.

Personal Assistants

If you employ Personal Assistants (PAs), you are responsible for training and managing them. If there are any problems, you are responsible for resolving those. Being a manager is a complicated and specific skill set, and it can be difficult to learn, especially if you have never worked in a workplace where you are managed. There are lots of resources available online, such as these ones from Skills for Care. 

Making a choice about your social care

The decision around whether you would prefer to use a care agency or direct payments is a very personal one. Ultimately, a care agency is often less work, whereas PAs give you a lot more autonomy. Most people eventually prefer to use PAs and there is a lot of peer support available, but if you are concerned about your ability to manage the responsibility and paperwork, it is worth considering using a care agency, at least at the outset.

However, there is no pressure for any particular method of managing your care to work for you – what matters is that you’re happy with it