Who will help care for my daughter after Brexit?

Published by The Mail on Sunday (5th November, 2017)

I came downstairs to find my wife looking dismayed and frazzled. One of the team caring for our disabled daughter was quitting, she said – and we both knew what that meant: another frantic search to find someone we can trust to come into our home to care for a young woman with highly complex needs and a life-threatening condition.

Months of advertising on websites, contacting colleges, sounding out specialist groups, talking to friends. Applications from people who are patently unsuitable, approaches from all over the place, then a barrage of wearily-intensive interviews.

It has never been easy to find people to assist Iona. She is blind, unable to walk or talk and cannot feed herself.  And she needs round-the-clock care.

Iona’s key problem is complex epilepsy that demands constant vigilance day and night. At any moment she can have a seizure that requires emergency medication, which occur almost daily and can quickly escalate into a life-threatening situation.

These seizures can be accompanied by screams and thrashing limbs, which is distressing for her but also for observers.

Even after 24 years, seeing these can be soul-destroying. Any plans must be abandoned while she sleeps off medication for several hours.

Yet she is a cheerful character when well – and over the years has been helped by an army of dedicated women to live an enjoyable and fulfilling life.

Some have been Brits. Yet most hail from further afield, coming to our London home from places such as Algeria, Colombia, France, Italy, New Zealand, South Africa and Zimbabwe.

But the bulk have been from Eastern Europe. We have had carers from Poland in particular, but have also been privileged to hire some fabulous people from the Czech Republic, Latvia, Romania, Slovenia and Slovakia.

Suddenly, however, this search for staff who keep our daughter safe, our family afloat and alleviate the pressure on public services has become significantly harder.

For while care demand rises fast in our ageing society, the pool of people prepared to do this challenging but crucial work is drying up after the disastrous Brexit vote.

And I fear it is going to get far worse, to the detriment of families such as my own.

Last time it took more than three months to find someone for a part-time care post. Increasingly, my wife and I worry that our daughter’s support system might simply collapse due to a dearth of staff.

Frankly, I find the situation terrifying. We have struggled for more than two decades to cope with the impact of a profoundly disabled child, adapting our home (by increasing our mortgage) and our lives to care for Iona within a family environment.

Now everything could be jeopardised by a nationalist surge, stirred up by self-serving populists, and a misguided crackdown on migrants.

These are deemed the sort of low-skilled foreign workers that politicians and pressure groups love to say Britain does not need. Yet they glue together society by doing all those unglamorous jobs in care homes, fast-food outlets and fruit farms.

Our personal situation symbolises wider issues that confront the country’s most important public services. Like it or not, we need these migrants in Britain.

Last week, it emerged there has been an 89 per cent fall in the number of nurses and midwives coming to work in Britain from Europe since the referendum vote last year. Yet the beleaguered NHS is struggling with a 40,000 shortfall of nurses.

There were an average of almost 2,000 people from Spain joining the Nursing and Midwifery Council’s register each year from 2012 to 2016.

Over the past 12 months, this has fallen to just 104 people. So why is this happening? Partly it is because Theresa May has, shamefully, used the 3.6 million European Union citizens living and working in Britain as a bargaining chip in negotiations over Brexit rather than clarifying their status.

This has left them facing an uncertain future after a vote that sent out a signal they were not wanted here. ‘Everyone I know is very worried what will happen,’ said one of our Eastern European carers.

Regardless of any final deal, the Government is simply being cruel to play political games with the lives of people contributing so richly to Britain.

Even key Brexiteers have condemned Mrs May for her shameful refusal to resolve this situation.

As economists point out, migration is not just a matter of countries setting controls. People must decide to move – and right now, with a thriving Polish economy and a fallen pound, fewer of them believe it is worth uprooting lives to move to Britain.

Net migration from East and Central Europe has halved since the Brexit vote, with figures from the ‘A8 Countries’, which includes Poland, at their lowest level since these nations joined the European Union in 2004. Fewer are coming here and more are leaving.

‘The recent fall is smaller than the declines we would expect if free movement is abolished, so is really just a taste of what is likely to come,’ warned Madeleine Sumption, director of the Migration Observatory at Oxford University.

This hurts the care sector, as my own family has found. Studies indicate that in London about six in ten care workers come from overseas.

It is easy for politicians to say Britons should fill the gap. Perhaps they should listen to the likes of Cloe Sinden, 24, who has been working with Iona for two years after three previous years working in an Essex residential home.

‘British friends always ask me why I want to wipe bums,’ she said, revealing the dismissive attitude so many natives have to such a vital job.  ‘Almost everyone I have worked with has been from abroad. Many of them are really over-qualified.

‘In my last job I could have earned far more working in Tesco,’ she added. ‘You do this job because you love it, not for the money.’

It can be tough caring for a person with profound disabilities, especially one with a life-threatening condition. The hours are anti-social, the days uncertain and the financial rewards never huge, even when earning significantly above market rates.

Yes, there is also big upside for the right kind of caring person – such as sharing the pleasure with Iona when she hears music, has a massage, enjoys dancing in her wheelchair or simply feels the wind in her face on an autumnal walk.

Certainly market forces could be used to pay carers more, which I would welcome. But any rise in costs would, of course, increase financial pressures on families and taxpayers.

Already more than half the spending of local authorities goes on social care for adults and children, with demand soaring. Yet the number of old people being helped has dropped due to cash restraints.

It would cost the State much more if Iona was in a residential home and regularly clogging up a hospital’s accident and emergency ward, as well as leading to a deterioration in her health and quality of life, as we have discovered in the past.

Additionally, we would not want any old jobsworth in our home looking after our precious daughter. There have been too many appalling cases of abuse and failure in care homes, especially involving people with learning difficulties.

Mrs May pledged in her election manifesto to make it a ‘priority’ in Brexit negotiations to ensure 140,000 staff from EU countries can carry on ‘making their vital contribution to our health and care system.’ Sadly, she has failed to do so.

Yet the Care Quality Commission watchdog warned last month that social care is ‘straining at the seams’ while Care England, representing almost 4,000 providers, has said there is now a ‘significant’ problem caused by this exodus of EU nationals.

‘We are finding it harder all the time,’ said Nicki Nicholls, director of nursing at Focused Healthcare, which provides paediatric support for families. ‘We are struggling because demand is outstripping supply.’

This problem is partly one of success since human beings are living longer. When I was born in 1962, the number of centenarians was in three figures. By the time I am 75, in just 20 years, it is predicted there will be more than 100,000.

Medical advances also ensure that more children with profound disabilities such as my daughter are surviving into adulthood.

All of this means more people in Britain needing help, more patients with complex conditions – and more demand for carers.

Few voters show much sympathy for these issues until confronted by them in their own family. I know I was the same. The health service is seen as sacred, yet the entwined social care system gets treated like some embarrassing poor relation.

This gathering storm over care staff underlines Brexit’s real impact. It is easy for politicians to make pledges to cut migrant numbers and issue sweeping statements about stopping low-skilled foreigners coming to our shores.

But the impact if this flow of dedicated workers dries up – on families, on struggling communities and on crucial public services – could be catastrophic.

Sadly, the evidence that it is already happening can be seen all too starkly.

Categorised in: Disability, Health, home page, Public policy