Who cares for our carers?

MORE than 15,000 Northern Ireland pensioners aged 70 and over are providing a minimum of 35 hours unpaid care every week – the equivalent of a full-time job.

And over 400 of them are 90 years of age or older, an investigation by Detail Data has revealed.

As Carer’s Week begins today Carers NI has warned the figures – calculated through an analysis of Carer’s Allowance claimants - are just the tip of the iceberg.

Research for Carers UK estimates there are now more than 220,000 carers in Northern Ireland – a 20% increase since 2001. The charity places their annual economic contribution at £4.6billion – similar to the entire 2016/17 Stormont health budget.

Yet Department for Social Development (DSD) figures show Carer’s Allowance is paid out to only around 42,000 people.

Carrickfergus man Richard Burnside, who gave up work in 2008 to care for his wife, told Detail Data: “There are more dark days than there are brighter days. There’s nights you sit here, not even the TV on, being down just looking at the walls and saying ‘how do we get through all this’ because it’s definitely not easy.”

Commenting on her husband’s caring role, Mrs Burnside said: “At night when I get into bed I wonder what Richard’s thinking about, what sort of life has he?

“If all carers went on strike where would the government be? If they were put in that position maybe they would realise how important it is. Maybe they would realise it is a tough job being a carer.”

According to Carers NI there are thousands of people like Mr Burnside suffering financial hardship, isolation and ill health as the numbers caring for family and friends continue to rise with an ageing population and pressure on health budgets.

The Northern Ireland Statistics and Research Agency (NISRA) projects the aged 65 and over population will increase by 25.8% between 2014 and 2024.

Evelyn Hoy, chief executive of the Commissioner for Older People for Northern Ireland, said: “Government and society is dependent on older carers - they save the health service millions of pounds every year by providing care and support to older relatives and friends.

“They play a vital role providing regular and substantial care, supporting loved ones to live dignified lives whilst remaining at home. Yet many carers go without much needed support and respite which could help them in their caring role.

“Older carers must not be taken for granted.”

Detail Data scrutinised benefit claims from 68,800 Carer’s Allowance claimants (May 2015) including information on their postcode area, age, gender and the amount they receive per week. This revealed:

• Carers (aged over 16) are providing at least 2.4million hours of unpaid care every week – if that care was provided by a home help on the minimum wage that could cost the government more than £16million a week in wages alone.
• 64% of carers are female.
• Almost half of carers have been caring for 35 hours or more a week for longer than five years.
• Of the 68,800 Carer’s Allowance claimants almost 25,000 of them are entitled to Carer’s Allowance but don’t receive a payment. This is because they receive another benefit which equals or exceeds their weekly rate of Carer’s Allowance. For example, 89% of them are receiving a state pension.

The statistics don’t include young carers under the age of 16, anyone caring less than 35 hours a week, anyone earning more than £110 a week after deductions, anyone in full-time education and hidden carers.

Our interactive map, which can be accessed above, shows the highest numbers of Carer’s Allowance claimants live in the postcode districts BT48 (3,320), BT34 (2,490), BT47 (2,470) and BT35 (2,300) which covers areas in Derry/Londonderry and Newry.

THE LIFE OF A CARER

Richard Burnside has been caring for his wife since 1998. In 2001 multiple sclerosis (MS) cost Mrs Burnside her livelihood and seven years later her husband gave up his job as he struggled with the demands of work and care.

The loss of two salaries had and continues to have a profound impact on their lives. It has also taken its toll on Mr Burnside’s health and social life.

The 54-year-old explained: “My life was pretty active before I started the caring role. I worked in Shorts for 23 years up until 2008 when the caring role became too much for me and I had to leave. It came to a point where medically I had burnt myself out.

“I went from getting £1,300 a month to getting a Carer’s Allowance, which then was just over £50 a week and now it’s just over £60. It was a big shock to us.”

Stringent restrictions mean anyone in receipt of Carer’s Allowance must be providing at least 35 hours care a week and cannot earn more than £110 per week after deductions.

Explaining why he gave up work, Mr Burnside said: “When I got married it was for better, for worse, in sickness and in health. Susan has MS but you just don’t walk away from that.”

Although his wife gets one or two weeks of respite care twice a year, which the couple has to part-fund, Mr Burnside uses that time to do work to their home.

He has a clear message for the new Stormont ministers and MLAs: “You are saying that it is a fresh start, a new start – start looking after our carers. Start looking after the people who are saving you money. We need people to listen to us and take action.”

THE NEED FOR MORE SUPPORT

Carers NI has warned government is not doing enough to support unpaid carers whose dedication allows thousands of seriously ill people to retain their independence and continue to live in their local community.

There is no reference to carers in the draft Programme for Government 2016-2021.

A Department of Health spokeswoman said: “The new minister is very aware of the commitment and dedication demonstrated by carers in our community and fully supports the vision that carers must be recognised as equal partners in care.

“The minister is committed to improving support for carers, and ensuring that they have access to the right information, advice and support at the right time to enable them to continue to perform their valuable caring role, if this is what they wish to do, without negatively impacting on their own health, wellbeing and life choices.”

Detail Data has joined forces with Carers NI who will today launch a new report at Stormont as well as our findings. MLAs will be asked to pledge their support to unpaid carers.

Carers NI general manager Clare-Anne Magee is urging government to work with voluntary and community organisations and local carer support groups to “make a difference to carers living in Northern Ireland”.

The charity’s damning report shows that many carers are struggling to make ends meet.

• 28% of carers are in debt as a result of caring.
• 51% have no one in the household in paid work.
• 68% are caring for more than 50 hours a week.
• Almost a third has a disability themselves.

Of almost 200 people surveyed many spoke of suffering anxiety and stress.

Carers NI monitored calls to its advice line over a week for Detail Data. Click here to read case studies from the calls.

Lesley Johnston, Carers NI advice and information officer, explained: “Unfortunately a lot of the people that we get coming to the advice line come to us at crisis point. Very often people are getting into debt before they even contact us.”

More than 1,500 calls are made to Carers NI’s advice line every year but that vital service as well as the support services and carers’ support groups they facilitate could be under threat because of government cuts.

Mrs Magee said: “The main issue in relation to funding is that our core grant from the Department of Health is being reduced by 25% this year and 25% next year and this is going to have a major impact on us as well as other organisations in the sector.”

The Department confirmed core grant funding is being withdrawn over a three year period “with the existing core grant scheme coming to an end in March 2018”.

CARER’S ALLOWANCE

The number of Carer’s Allowance claimants has increased dramatically in the last 10 years.

There has been a 177% increase in the number of over 65 year olds claiming for providing care but a drop in those actually receiving Carer’s Allowance over the decade.

The percentage of claimants of all ages in receipt of Carer’s Allowance has also fallen from 71% in May 2005 to 61% in May 2015.

A response from the Department for Communities stated: “The proactive targeting of carers with potential entitlement to Carer’s Allowance is a key priority for DfC. A multi strand approach has been adopted to help achieve this goal which includes indirect targeting, such as the Make the Call advertising campaign; direct targeting, where customers are pre-selected for a benefit entitlement check; and partnership working with groups, organisations, and statutory bodies who work with carers.

“This approach has resulted in 8,968 people receiving an extra £30.1million in unclaimed benefits since the programme began in 2013. From this total figure, £785,211 was paid out as Carer’s Allowance in 2013/14 and in 2014/15 this figure rose to £1,231,709.”

From autumn 2016 a new three-year Department for Communities campaign (Supporting People – Maximising Income through the Uptake of Benefits) will include a focus on carers.

The Department added that there are no plans to review Carer’s Allowance.

Lesley Johnston from Carers NI said: “Carer’s Allowance is £62.10 a week for the people who can actually claim it. People find that it’s a pittance really. They feel they should be getting something equal to the minimum wage.”

And Clare-Anne Magee, also from Carers NI, added: “The difficulty with Carer’s Allowance is the strict eligibility criteria, some people are caring 24/7 and still only get £62.10 per week.”

The new Department for Communities – which has taken over DSD’s functions - will apply already agreed changes to the welfare system which could also impact on the benefits carers receive.

A person will no longer be entitled to Carer’s Allowance or Carer’s Premium if the person they care for doesn’t qualify for Personal Independence Payment (PIP), which is replacing Disability Living Allowance (DLA).

CARING FOR CARERS

Carers NI also believes an urgent review of the 10-year-old government strategy Caring for Carers is needed.

The Department of Health policy acknowledges that “carers reduce the amount of input that health and social services and other agencies need to make”.

A spokesman for the department said: “A number of priority areas have been identified already and these include how best we recognise the contribution of carers and support them in their caring role. It is anticipated that proposals for change will be issued for consultation in 2017 with policy change to follow.”

Almost half of carers surveyed by Carers NI said they have received little or no helpful information from government about where to go for support.

Many cited problems with Carers’ Assessments which provide an opportunity for carers to discuss with their local social care trust what support they need.

Carers NI’s Clare-Anne Magee explained: “Carers’ Assessments need to be more than a tick box exercise. They are something that should be offered to all carers under the Caring for Carers strategy.

“We have heard from carers that they think it’s very formal, they don’t like the term assessment and don’t necessarily think they require an ‘assessment’.”

A Department of Health spokeswoman said: “The regional Carers’ Assessment tool has very recently undergone a review, with important changes being made; the new electronic version will be introduced at the end of the summer. The Carers’ Assessment tool has been renamed as the Carer Support tool which better represents its purpose.”

Latest figures show just 40% of Carers’ Assessments were accepted/completed in December 2015 and 60% were declined by carers – an ongoing trend since June 2011.

Of those declining:

• 19% felt the time/place/environment offered was unsuitable
• 17% did not see themselves as carers
• 17% wouldn’t give a reason
• 6% didn’t want to discuss their caring duties

Although the Caring for Carers strategy dedicates a section to young carers and highlights the importance of providing support for them, neither the Departments of Education nor Health hold figures on the number of young carers aged under 16. However, a Department of Health spokeswoman said the “numbers of young carers up to the age of 18 availing of services by trusts” was 547 as of March 31, 2015 adding “these numbers do not include all young carers only those availing of services”.

In comparison Crossroads Young Carers estimates there are more than 8,000 young carers in Northern Ireland with the youngest aged just five.

To access the data click here http://data.nicva.org/dataset/carers-allowance

For more information on Carers NI click here or go to NI Direct - https://www.nidirect.gov.uk/information-and-services/caring-someone