By Dr. Matthew J. Knight, MBBS, BSc, MRCP, PGCERT

News in yesterday’s BBC health section reports worryingly that older carers are risking their health looking after their loved ones.

A Carer is a person (relative or friend) who takes on the care responsibilities in a voluntary capacity/ non-professional capacity for another person who in some way is restricted in their ability to look after themselves. They are often not trained and would typically be the often-elderly spouse or children of an elderly person (but could for example be elderly parents looking after a child).

Providing physical care can be extremely taxing (ask any nurse or healthcare professional) and many carers have little outside support- meaning that in effect they are providing unpaid care 24 hours per day, 7 days per week.

Recent data released by Age UK and Carers UK indicated that there are over 1.2 million carers aged over 65 (and a total of 6.5 million Carers across the UK)- and that this has risen year on year over the last decade. Most worryingly though is the fact that there are approximately 90,000 carers aged over 85 years old, who themselves have significant health issues. (1)

These elderly carers are at high risk of neglecting their own health at the expense of caring for their loved ones. The result of Carers not caring for themselves is likely to be increased health morbidity in that population, with the associated increased use of health care services that comes with that.

What are the reasons behind this? The answer is of course multi-factorial. Some of the factors that play a role are:

• A resistance from the older generation used to fending for themselves to receiving help from strangers.
• Reluctance to accept that help is needed.
• Recurrent scandals in the care sector resulting in poor care make selecting a care firm to help challenging.
  • High staff turnover
  • Poor employment practices and low pay within care companies
  • Poor training and staff selection by care companies
• Financial restraints of commissioning extra care – those with even very modest savings could find themselves footing a large bill. The cap on care costs of £72,000 has gone some way to reassuring people that there is a limit on how much they will pay for care- however the majority of people are unlikely to reach the threshold.
  • If admitted to a care home there is still an expectation to contribute £220 per week for costs of food and lodging
  • Care at home on average costs £160 per week (ranging from £100 up to £2,000 per week for more intensive packages) and Residential care in London costs around £715 per week. (2)
  • The BBC cost of care calculator can be of use for estimating your likely contribution towards care costs
• A desire to leave a financial inheritance to children and grandchildren to help them with getting on to the property ladder.
• The process of social, geographic and demographic change within society with an increasingly elderly population, with fewer offspring who live further away has resulted in many elderly not having any form of regular reliable help form close family members.
• Barriers to accessing help and assistance. The social care maze can be difficult and mind boggling for anyone to navigate- even more so for the elderly and those who are devoting so much time to care. The disconnection between health and social care up to date has made seamless communication between these two vital pillars of care

The successive governments have taken actions to try and reduce the burden of care on relatives and Carers. Many patients that I meet are unaware that they may be entitled to some financial help in the form of the Attendance Allowance if they need help or supervision during the day or night (this starts at the lower rate of £55.10 at the time of writing and increases to £82.30 for those with more intensive needs). In addition to this help may be available in the form of pension credit, housing benefit and council tax reduction.  This help could be used to contribute to commissioning care at home. You may also find that you are eligible for Carer’s Allowance  if you are providing care on a regular basis.

The Care Act of 2014 has gone further than previous legislation to impart a responsibility for care onto local authorities. The Act tries to address the need for care assessments to be driven by needs rather than tailored to types of services available. Local authorities now have an obligation to fully perform care assessments on all that feel that need them, and to be responsible not just for caring for those with needs but also to provide preventative services to help prevent care needs from developing in those at risk of health deteriorating.  In particular the Care Act stipulates that local authorities must provide information on

• Types of care and support that are available- especially for those with special needs such as dementia care, reablement, etc.
• The full range of care providers.
• Where local residents can find independent financial advice to help them plan for care.

Of course, despite all this help a large number of people still are required to pay for the majority of the care they receive up to the threshold. The current squeeze on local authorities budgets has resulted in poor employment practices within the care sector becoming even more prolific- with reports of up to 220,000 professional care workers being paid below the national minimum wage – further compounding the problem of poor quality care that many receive (and the reluctance of many elderly people to be reliant on what they view as low quality unreliable care). (3)

How can I help my parent with care needs?

Being both a doctor and a director at Penrose Care (a home care provider based in Hampstead (NW3) London), this is a question I get asked on a frequent basis. The first stage to this is to accept that there is a problem- be proactive, start planning ahead. It may be that as a child with elderly parents you need to proactively raise this topic in conversation over several weeks or months.

Get a formal assessment of needs- quantify the problems, objectify them, see what help is actually needed. With the Care Act 2014 this process of having a needs assessment should be easier, and your GP should be able to offer advice here. You may also wish to approach a care firm to perform a needs assessment (they usually charge for this service unless you subsequently use their services).

Make sure that you claim in full for financial assistance that may be available (Attendance Allowance, Carer’s allowance, Pension Credit, Housing benefit reduction).  This money could be used towards commissioning ‘respite’ care in the week (for example to pay for a professional carer or support worker to come once or twice a week to provide relief, help with cleaning or domestic tasks, help with physical care or even to provide support for the main carer to have some relaxation time). Sadly, at Penrose Care it is our experience that many Carers do not devote sufficient time or attention to looking after their own health and leisure needs. We often find that by the time we start providing care services to our clients that the main carer or carers are near the point of exhaustion.

Finding other activities that provide enjoyment and respite both to the Carer and the person being cared for is vital. Day centres, friendship centres and activities (such as those advertised on local council websites, Age UK, Carers UK and community and religious groups in the local area) can provide welcome respite and relief for both Carers and those needing care.

How can I choose a good care firm? How do I know that the care firm I use will care for my parents?

Again, over my career this is a question I have been asked very often. It is unfortunate that large numbers of reviews along the lines of ‘customer satisfaction’ seen on websites such as Amazon are not available for care.  My suggestions for helping to find good care firms are :

• Read the latest Care Quality Commission report for that provider.
• Read reviews about the provider on NHS Choices.
• Search on google and look at Google reviews (if any) about the provider
• Is the provider a Living Wage employer?  Paying the Living Wage (rather than poverty line wages paid by many in the care sector) is a mark that that firm values and cares for its employees- which is a good foundation upon which to build a team of caring carers.
• Word of mouth- ask around (friends, local groups, GP and practice nurses, etc).

Good questions to ask of a care firm would be

• What was your staff turnover last year?
• Are you a Living Wage employer?
• How many carers will be involved with the care of my parent/ spouse?
• Are you staff paid for commuting time between shifts (a mark of a care agency committed to looking after its staff is that it follows HMRC guidance on this).
• What programme of ongoing Continuing Professional Development do your care staff undergo each year?
• What do you think makes a good care worker? See whether you and your loved ones agree with the answer.

It is unfortunate that in this time of growing need for care there appears to be a lack of care providers committed to high quality compassionate care. However, there are a growing number of them out there and it is worth making the effort to find one.

With growing evidence of the detrimental effects on health of the elderly providing 24/7 care for their loved ones, it is necessary to be proactive in ensuring that sustainable care arrangements are put into place. If they are not, the consequences for the health of the Carer and the person cared for could be catastrophic.

Links to Helpful Websites

http://www.carersuk.org/

http://www.goodcareguide.co.uk/eldercare/

http://www.ukhca.co.uk/findcare/

http://www.homecare.co.uk/

References

(1) Triggle, Nick, “More older carers ‘risking health’”: 30 April 2015 (BBC News, 2015), available online here.

(2) “Care in the UK: The costs you face”: 26 Jan 2015 (BBC News, 2015), available online here.

(3) Ramesh, Randeep, “Care workers being paid below minimum wage”: 29 Aug 2013 (The Guardian, 2013), available online here.

Dr Matthew Knight is a co-founder of Penrose Care and also a hospital physician in north west London with a specialist interest in Respiratory and Internal Medicine.