Listen and learn

Lauren King MSYP has helped to care for her younger brother Ryan, who has cerebral palsy, since she was seven.

“I didn’t really know that I was a carer until I was 14 - so many young carers don’t realise that they are carers. And there is so little actual research out there about young carers.”

There are an estimated 100,000 young carers in Scotland – 10 per cent of the school-age population – who the Scottish Youth Parliament (SYP) estimates save the Scottish Government £10.3bn every year through providing unpaid care. And yet, despite this they are often overlooked, says King.

The SYP published its ‘A Costly Youth’ report in August, which highlighted the anxiety and pressures many young carers face. It found that 74 per cent of young carers have experienced stress or worry due to their financial situation, with 80 per cent reporting that financial pressures have affected their ability to study and led them to consider dropping out of their course.

While King believes the Scottish Government has done “quite a lot” for young carers, such as by supporting the Young Carers Festival and the Young Carers Strategy, she says the three areas identified in the SYP Care.Fair.Share campaign - extending the concessionary travel scheme to young carers, ensuring young carers do not lose their Education Maintenance Allowance due to absences or attendance issues if their caring responsibilities require them to be at home, and additional financial support for young carers through SAAS to help them stay in further/higher education - could make a significant difference to the finances of young carers.

Earlier this month Scottish Labour threw down the gauntlet to the Scottish Government by pledging to fully commit to the SYP campaign and investigate what other measures could be introduced to help young carers access education and training. Launching its “Carers’ Labour Network” with Carers Champion Clare Lally, Scottish Labour’s Shadow Minister for Wellbeing Rhoda Grant MSP said the party would also give the Care Inspectorate responsibility over inspecting carers’ services and require local authorities to do yearly reports on carer’s support and services.
However, the Scottish Government is also committed to listening to and acting upon the views of carers, insists Public Health Minister Michael Matheson, who is the minister with responsibility for carers policy. And he cites its commitment to holding an annual Carers Parliament, the third of which took place last week, as an important way of enabling carers to raise the issues that impact most on their lives directly to MSPs and ministers.

One of the things that was highlighted at the first Carers Parliament was the issue about access to information and advice for carers, where carers felt that they didn’t know where to turn to get the right information and advice on the support that might be available to them, or the guidance and advice that they require. So that is one of the issues that we took away and considered, how can we do that much more effectively,” says Matheson.

To progress this, at the second Carers Parliament the First Minister announced the Scottish Government’s intention to bring forward specific legislation to promote, defend and extend the rights of carers and young carers. The Scottish Government is currently drawing together the consultation responses and Matheson says they expect to report shortly, with the final detail of the Bill emerging by the end of the year. However, in the run up to the independence referendum the Scottish Government had pledged to go further still to address the financial difficulties faced by carers.

“One of the areas that we have identified that could assist in addressing that was the carers’ allowance, which to a large extent has become a benefit that is forgotten about and hasn’t substantially changed over many years,” Matheson explains.

We had identified that as an area that we could address in order to try and help to support carers more effectively financially. We need to recognise the significant financial contribution that carers make, which if they weren’t undertaking their caring role would fall on public agencies. So we have a responsibility to do that. We won’t be in a position to address carers allowance unless that is an area that is devolved by the UK government as part of any welfare measures that are devolved to the Scottish government. But it is unlikely we will be able to address that.”
However, he insists that the Government will “not stand still on the range of areas that we can take forward,” and acknowledges that there is still “a tremendous amount” to do.

“One of the aspects I’m keen to see through the legislation is that more carers are able to access the services that they require. That is about helping to plan much more effectively, supporting carers’ needs and to make sure our local authorities have a much more consistent approach in how they go about supporting carers and assessing their needs. And they are areas where I believe the new legislation can assists us.”

Florence Burke, Director, Carers Trust Scotland, welcomes the national attention for carers. However, she points out that while policy happens nationally, it is delivered locally, and so says she would like to see more recognition for local carers’ centres and “greater clout” given to local and young carers’ strategies.

In addition to facilitating the annual Carers parliament, the Carers Trust Scotland also organises an annual festival for young carers, which this year was attended by over 700 young carers from across Scotland. The festival was designed to celebrate the work they do and give them a much needed break. However, Burke is proud of how young carers have chosen to also use it as an opportunity to influence the development of policy and support.

“We speak to them to get feedback and, yes, it is about cupcake making and face painting is great; but they want to tell you what has changed for them as a result of the festival from one year to the next. They want to find out who is coming the next year and how they can be involved. So the feedback that comes back from the festival isn’t just about - for a lot of events it may be about the accommodation and the food, the discos and the entertainment. But it is what else could be done and different ways that we could ensure that they have an opportunity to speak first hand to these individuals. So it really is a forum for young carers.”

Ahead of this summer’s festival the Carers Trust Scotland published research that highlighted the significant financial strains young carers are facing and the knock on impact this can have on their physical and mental wellbeing. It found that three in four young carers have responsibility for food shopping and cooking the family meals. However, only 38 per cent cook meals from scratch, and only 9 per cent said they ate the recommended five portions of fruit and vegetables a day.

Quite simply, they don’t have time and can’t afford to eat properly. The time and financial impact of that is it is quick meals, if any meals. So you are not getting enough nutritionally, you are not getting enough rest or sleep, which impacts on your physical health, your mental health, and then there are issues where you are also just trying to be a young person, attend school, look for jobs and opportunities.”

That pattern for diet and income is reflected in carers of all ages, she adds.

“Carers come from all walks of life. Some may be better resourced and have family resource behind them. But for those who are caring for long hours, that is where it really hits your finances most and it is how that then impact on other things like diet, exercise, your ability to socialise as well, at that is whether you are a carer of 15, or 55.”

When King was finally recognised as a young carer she says the respite and emotional support she received helped her to feel that she didn’t have to build things up inside. Her first-hand experience makes this an issue close to her heart, so she is pleased to see it being championed by the SYP and hopes that it will lead to improvements for young carers and a lessening of the financial strain.

“Our MSYPs vote on campaigns based on how our constituents have told them to vote, so it shows that so many people in Scotland want change for young carers and think young carers deserve better.”