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Choosing care provision for a person with Parkinson’s

As a person with Parkinson’s (PwP) or carer, it’s likely that you will at some point need to choose a care provider. To help with this important choice, we have gathered here some sources of guidance that you may find useful.

On this page:

Impartiality

Oxford Branch cannot offer personal advice about what kind of care is best for your needs, nor can we offer information about specific care providers. The sources of information given on this page may help you to make an informed choice. When you have chosen a few likely providers, you should try to find opinions from people who have used those providers and can give an honest evaluation of their experience. Obviously, if you can find someone whose needs are broadly similar to your own, their opinion will probably be more useful than that from someone who is in a very different situation.

Care options

This section gives a very brief outline of the various kinds and sources of care that are available.

Styles of care

Today there is a huge choice of types and styles of care, ranging from occasional home visits from a carer to help with personal and domestic tasks, all the way through to full residential nursing care for people who need regular and frequent support. Care in your own home may be from visiting carers or from a live-in carer. Outside your home setting, you may be able to find day care centres that offer support and meals for some part of the day. There are also various kinds of assisted living that can be as independent as a self-contained flat with a warden on hand to help with emergencies, or can include varying levels of catering, care, or nursing support.

A carer in your own home

Care in your own home, whether it’s a visiting or live-in carer, can be provided by a care agency, a carer that you engage directly, or even a relative or friend.

If you use an agency, you have peace of mind knowing that the agency will find you a substitute if the carer falls ill, goes on holiday, or changes job. On the other hand, you may find that the carer changes more frequently than you would like, which can be difficult if PwP and carer have built up a good personal relationship. The agency will also charge a fee in addition to the carer’s pay and other costs, so it may be more costly than employing a carer directly.

You may feel that a self-employed carer may be more committed to your care and may come to be a good friend - but you take on the responsibility of ensuring that the carer is properly qualified and checked, and you have the added responsibility of acting as the carer’s employer. If your regular carer is unavailable through illness or any other reason, you will need to find a replacement.

Making your choice

There may be more than one style of care that could meet your needs, and you will need to consider the various options carefully. For example, having a live-in carer in your own home can be a more comfortable option, in more familiar surroundings, than a care home - but you also need to consider that a live-in carer will need time off and may not be the best choice for a PwP who needs round-the-clock care.

Sources of guidance

It is very important to note that Oxford Branch cannot give you advice about the suitability of any particular carer or agency. However, there are several organizations that provide impartial guidance and we strongly recommend that you investigate what they have to say.

Care Quality Commission (CQC)
CQC is the national independent regulatory service for health and social care in England. Their website allows you to search for care services in your area, and find the CQC inspection ratings for each service.
Carers Oxfordshire
Carers Oxfordshire is a free service designed to help carers at every stage of their journey by providing information and support. Their website is a rich resource for carers. Among other services they offer free emergency care for up to 48 hours when the carer falls ill or has to attend to a family medical crisis, leaving the person cared for at risk. They also have a volunteer befriending service that can give carers an occasional break (although this service cannot offer personal care or help with medication). There is also useful information about finding and engaging home care. [UPDATE December 2020] This home care link on the Carers Oxfordshire website appears to be unavailable at present. There is some information available at this link.
Oxfordshire County Council
Oxfordshire County Council's website has comprehensive information about the Council's own services and the support they can provide. Their adult social care page is a good starting point. There is also a useful page on choosing respite care.
Live Well Oxfordshire
The Council also provides valuable care information on their Live Well Oxfordshire website which includes a listing of local care providers - you can find that list using this link.
Consumers’ Association (Which?)
Some of the Which? guides and information relating to care are available free without a subscription. They have useful and unbiased information on how to organise care in your own home and a listing of care services in Oxfordshire.