Time to stop talking and start spending to help our carers

Unpaid and unheralded, those who care at home for their loved ones urgently need our support, writes Dr John Hillery in the Sunday Independent

The recent RTE Prime Time special on ‘Carers in Crisis’ caused much comment and empathy. However, carers don’t want empathy or sympathy or admiration. They just want a little help.

Our society values the work of carers but now it is time to show we do. International research shows that carers spend emotional and financial resources without question on caring. For many, this is a lifelong commitment which is made at the expense of their individual needs.

Research carried out by the College of Psychiatrists of Ireland with the Carers Association Ireland in 2009 showed that over 12pc of carers have been doing so for over 20 years.

The international experience of emotional and physical morbidity and social isolation due to caring is shared by carers in Ireland. Sixty-three per cent indicated they were mentally drained, with 31pc having a formal diagnosis of an anxiety disorder. More than half reported they were physically drained.

The percentage of the population who are informal carers is growing. The 2016 census showed a total of 195,263 persons (4.1pc of the population) were providing unpaid assistance to others, an increase of 8,151 on 2011. Over half were between the ages of 40 and 59. Most shockingly, the largest percentage increase was among those aged 85 and over – a whopping rise of almost 35pc.

The college is about to repeat its research of 2009 but a carer predicted to me last week that the results won’t be much different. Back then, those surveyed had a few simple aspirations: an extra 10 hours per week to call their own and to work on their own health; better support services especially home help and respite; more financial support; more joined-up thinking between agencies related to caring; training in practical issues related to caring; psychological support for carers; and better public understanding of caring.

The human cost of caring is undoubted but may not make a persuasive argument to those who decide on the division of scarce national resources. Carers save the national purse a huge amount of money with UK estimates of £100bn (€114bn) worth of unpaid work to the economy.

A 2014 UK Department of Health study found that an extra £293m (€334m) would save the exchequer £429m (€489.5m) in replacement care costs and see further ‘monetised health benefits’ of £2.3bn (€2.6bn). So every pound spent on supporting carers saves that system almost £1.50 on replacement care costs and benefits the wider health system in the longer term by almost eight times that amount.

So what can be done? The National Carers Strategy has 42 actions. Implementation of these is to be ‘cost neutral’. Such an aspiration is, in the context of their personal investment, insulting to carers. The slowness of implementation of the actions as recorded by the Family Carer’s scorecard is disheartening.

The last scorecard (2017) reports only one action received an ‘Objective Achieved” score, with eight receiving ‘No Progress’ and five actually getting a ‘Regressive Score’, meaning that the situation has worsened since the strategy was launched.

We should all be angry about how little support carers get. We must stay angry though and advocate actively.

Caring is not cost neutral for carers so why should it be so for the State? Carers are not looking for much; however, the lack of implementation of a “cost-neutral” strategy and the trumpeting of recent budget allocations to Intellectual Disability Services in the millions as huge amounts are another slap in the face for carers.

Psychiatrists who work with adults who have intellectual disability are dealing with families who are caring for those with multiple disabilities including mental health problems. In people with intellectual disability, such problems often manifest as behaviour problems. The Tallaght National Children’s Hospital Neurodevelopmental Clinic has initial research data showing that only 50pc get regular respite care. The dreadful prospect for the parents of these children is that they will lose this once they reach 18 and leave school.

I have spent over 20 years asking why this happens and have not received a satisfactory answer. Surely planning for the respite needs of adults with intellectual disabilities and behaviour problems who are already known to the system should be a simple exercise?

Ireland is envied in other countries for having a National Intellectual Disability Database. Some 28,275 people with an intellectual disability were registered on it in 2016. 19,416 lived with parents or other relatives but only 4,385 people received respite. Comparison with past reports shows a decrease in respite places rather than the needed increase. The database has very good statistics to aid planning for this group and includes varying future service needs such as over 17,000 people need new or different support in the next five years.

So planning is possible. Few are against the State giving support to carers.

Carers ask for a little and give a lot both to their loved ones and the State. Why then do the stories of carers not change? Maybe the State cannot afford to give more?

I recently was unable to print out a questionnaire for the carers of a man I was assessing as I was told the clinic had passed its paper quota for the month. If this is an indication of the financial state of the health services, the time has come for honesty and to admit that we cannot finance everything and must prioritise.

I for one would make a case that proper support for carers produces wide benefits that can be justified in humanitarian and financial terms.