My name is Melissa and I am a single parent of two, including one with a disability.

For nearly five years now, I have been making my own way as my children’s primary carer.

It hasn’t been easy, but I’m proud to have come as far as I have. Nobody can accuse me of complacency – we all know how hard parenting is already anyway, without guilt becoming an obstacle. I’m enjoying seeing the kind of people my children are turning into, and how they relate to each other, their cousins, their friends, their friends’ parents, their schools, their carers and the wider community. They don’t see their father, which is a shame – but the circumstances of the breakdown remain between me and him.

My oldest child, Isobel, has just had a hip salvage operation in hospital. At nearly eight years old, this is her first ever surgery. It’s major.

Her right femur had a 80% risk of migrating from its hip socket, which would have caused Isobel lifelong pain; that she was asymptomatic is a miracle. 

In addition, both thigh bones were ram-straight at the top instead of gently curved, due to restricted mobility brought on by cerebral palsy.

So fairly substantial bone restructuring was involved in the surgery, and that’s notwithstanding the installation of metal plates to correct development and keep the femurs in joint. Isobel may have these surgically removed at a later stage as she grows.

My name is Melissa and I am a single parent of two, including one with a disability.

The circumstances that I find myself in are unavoidable yet necessary, for the sake of my children’s wellbeing. Thanks to the sacrifices I have had to make on top of being a parent – setting aside extra time for Isobel, like I have done these last few weeks, and will do again for the rest of her convalescence, and again countless more times after that, for as long as she and I live – I am never again going to be able to gain useful employment.

All I have to trade on is my writing, and the fact that I had a portfolio career in the arts and media before I became a mother. We could dream of my becoming the next J.K. Rowling, but let’s be pragmatic for now.

I am a carer as well as a parent, and will always be besieged by bureaucracy and paperwork relating to my daughter’s disability. As the non-disabled sibling, there’s no way her baby brother generates anywhere near as much printed tree pulp. He may be five, but I’d say the forms I fill in for him are one-fiftieth of his sister’s.

However hard I work at boosting my energy levels with homemade multivitamin juices, beans and pulses (and these are certainly effective) I still crash out at night in spite of the voluntary and paid support I’ve built into our everyday routine. Often, my own tiredness has to wait until I’ve also addressed the needs of an inquisitive five-year-old lacking a second parent.

I am not merely complaining. I want to highlight the reality that reduces my capacity for work, freelance or otherwise, and how that is being aggravated by the present economic climate. I cannot be in two places simultaneously, never mind three. The same is true of my own mentality. 

Even writing this requires a particular surefootedness that can’t be achieved if I came straight off the bat of three hours in a full-time caring capacity, because of the demands that places on my thinking altogether. It’s a bit like attempting clear handwriting when your brain is an utter scramble, 24/7 manifold. You just can’t switch off.

I have been a parent-carer for eight years. I have only been able to write this after a three-year lapse in blogging because my daughter was in hospital for the first time since 2013, all her needs were being addressed, and my youngest was staying overnight at a friend’s house.

My name is Melissa and I am a single parent of two, including one with a disability.

It is for people like me and my children that the welfare state exists as an indispensable safety net, with the National Health Service front and centre as its most potent symbol for 69 years.  I have no idea what I’d do without them. Given the circumstances it would be impossible to imagine what I’d have to do to fundraise for something as major as a child’s hip salvage operation under an American-style healthcare system – never mind the equipment, social care, medication, rehabilitation, medical reviews and therapies she will need for the rest of her life.

Where would I find the time and energy – let alone the money and highly specialist medical expertise? Can anyone honestly tell me the NHS will prevail in our lifetimes? 

Because if so, I’m inclined to think they’ve been hoodwinked. The familiar blue-and-white logo may be all over the medical correspondence I get most days, but it no longer feels quite like the stamp of public-duty comfort it used to be.

My name is Melissa and I am a single parent of two, including one with a disability.

The last 24 hours prior to Isobel coming home from hospital were stressful. Her social worker had advertised well in advance for two-handed care, two hours a day every day for the full six-week recuperation period, but was shocked to find none was forthcoming – not just in our locality, but anywhere.

She wound up ringing everyone over 24 hours just before she went on holiday, to little avail. I finally put her in touch with a specialist school, who then provided the necessary carers at the reduced capacity of one for two hours a day on certain days of the week.

The sole agency that could offer care at all, filled a total of four hours over two days in one week; being deeply short-staffed, they haven’t been able to organise much more.

The leftover care hours I have had to make up for with voluntary support from family and friends where possible, with the remainder done by myself – which, unfortunately, has led to back pain.

Is this an acceptable situation for an ordinary single-parent household entrusted with the upbringing of a disabled child? If love conquers all, why do I feel my love and care is not enough to ensure the quality of life my beloved daughter deserves? 

I am just one person tackling a metaphorical safety net that has collected some ominously large holes since 2010. Surely I am not asking for much? It’s not like the NHS has never topped global polls – including one this very month, is it? How does that make it deserving of persistent underfunding

This is not about being left or right wing. This is not about blaming the people involved in my children’s care – indeed I can’t overstate enough how dedicated they are to their jobs. This is about making sure people are well looked after.

Three times alone this week, the subject of government cuts has entered the conversation with social services and carers, with hardly any prompting from me. Now these are not political activists. They are professionals so committed to serving the country that when they find they can’t do even that, they start to despair. Situations like that hit home the notion that you cannot put a price on public duty. These guys deserve so much better. We all deserve better.

My name is Melissa and I am a single parent of two, including one with a disability.

I am angry, too, at the accumulative cuts that have led to my and my children’s current predicament. I don’t believe the austerity lie that has persisted for years, especially since the Conservatives swept into power in 2010 – first in coalition with the LibDems, then alone. Shrinking public services to pre-1930s levels, like they said they would, has no purpose other than to increase the flow of money upwards. You don’t have to take my word for it – the figures speak for themselves.

However I have a responsibility to my children to find a way to channel my anger. I want them to grow up with a sense of hope and purpose, so they can contribute positively to the change in the world I’m sure they’d want to see. 

It’s hard when those holes in the welfare state keep buckling as the years go on without much evidence of governmental concern. Sometimes I have to grit my teeth and dig hard within myself for my own sense of purpose, otherwise I’ll buckle too. I am often my children’s only safety net.

My name is Melissa and I am a single parent of two, including one with a disability. This is the situation I, and many, many other single parents of disabled children like myself, face in Britain today.

And it doesn’t. Have. To. Be like this. 

Photos of Isobel in hospital. All copyright Melissa Mostyn 2017 apart from top picture, which is credited to Pauline Latchem

My Daughter And I – e-book launch

FOR IMMEDIATE RELEASE
6 March 2014

MELISSA MOSTYN LAUNCHES FIRST E-BOOK

20140307-003218.jpg

WENDOVER, BUCKINGHAMSHIRE – Following the popularity of her blog, The Mostyn-Thomas Journal, Melissa Mostyn will be launching her first e-book, My Daughter And I, on Thursday 24th April, 2014.

The book charts the developmental progress of Melissa’s daughter and first child Isobel, who has cerebral palsy and associated disabilities, right from the day of her birth up to the present day via blog posts drawn from the Journal, and includes chapters that were never published online.

“The point of my blog was to help me make sense of what was happening to Isobel,” explains Melissa. “At the time there was so much going on I couldn’t absorb each new piece of information properly. But I had to find a way to keep moving on, so I could be strong and be there for her as her mum.”

What makes My Daughter And I unusual is the fact it is written from the perspective of a deaf person. “I am pre-lingually deaf,” says Melissa, “and have no memory of having hearing. So I cannot say I have a hearing loss. I had worked with people with disabilities before I became a parent, so I probably brought a rather divergent attitude to the table.”

Melissa is open about the fact that she blogged primarily for her own benefit: “Of course I was reaching out. That’s what you do when you find yourself very isolated in your own personal turmoil. But what I didn’t expect was the response my blog would get.”

Indeed, soon after starting her blog, Melissa found herself receiving messages of support from people she didn’t think would have much interest: childless people, adults with disabilities, parents of non-disabled children, members of the Deaf Community, people whose parents had disabilities of their own. “My readers came from all walks of life,” she says, “which, in retrospect, shouldn’t be that surprising perhaps.

“When I look back at those posts, I realise that somewhere in there is an universal message that they can all relate to, and I think it’s to do with the human condition and what it’s capable of in times of adversity.”

Personal circumstances prevented Melissa from continuing the blog, but she wasn’t prepared to give up.

“I became a single parent of two very young children fairly recently, and was too busy to keep blogging,” she explains. “However, by then I had three years’ worth of material to draw from; material that I’d worked so hard to write. I couldn’t let this go to waste.”

Hence the idea of the book. “Not only that,” Melissa continues, “but Isobel was still evolving. There was a concurrence between her child development and her evolving disabilities, ensuring there was no knowing what to expect, and I had to keep adjusting as we went along. The new chapters in the book is a way of reinforcing the sense of a continuing journey.”

Although the book’s title purposefully highlights Isobel’s starring role, Melissa stresses that it also explores the broader family dynamic: “I cannot deny the huge impact Isobel’s disabilities have had on the household as a whole. Building in the arrival of her baby brother Benedict, and the areas of interest I developed afterwards, was just as important a way of showing how we all adapted to being a deaf and disabled family.”

My Daughter And I is self-published. Its launch on Kindle will be celebrated with a small event by invitation only in London on the same day. Press enquiries can be made to themostynthomasjournal@gmail.com

My Daughter And I: a story about child development, parenting, love and disability, out on Kindle 24th April 2014

In advance of the book’s release, The Mostyn-Thomas Journal will go offline on 6th April 2014.

Twitter account coming soon! ‘Like’ us on Facebook

– END –

Eleven reasons why the UK deaf population should join the war on welfare

These are scary times we are living in. Over the weekend, the spectre of ’80s political tension has rematerialised with rioting Millwall fans and Thatcher death-parties in Trafalgar Square.

The economy, and in particular the deregulated banking sector, is making headlines too, with fears that Britain could become either another Greece (total financial chaos – remember Northern Rock?) or another China (totalitarian state), depending on your point of view. Whichever way you look at it, George Osbourne is the most unpopular MP in nearly 10 years.

The welfare reforms are more than just benefit cuts. We are part of the estimated 3.7 million deaf and disabled people set to lose a total of £28 billion over the next five years; a whopping £757 per person, and that’s just the start. The cuts are an attack on everything to do with our well being: our health, employment, family, relationships, housing, education, money and leisure. Broken down, this is how our welfare, equality and human rights are being eroded, bit by bit.

1. Disability Living Allowance (DLA) is being replaced with Personal Independence Payment (PIP).
The roll-out started last Monday in parts of the North of England, aiming to go nationwide in June. Just because we’re permanently deaf doesn’t mean that the PIP assessment procedure is going to be the same as the one for DLA. Instead of bringing in NHS doctors at no cost to the taxpayer, the government are paying ATOS £1 billion – along with two other companies – to assess us for PIP, aiming to cut benefit claims by 20%, meaning that half a million genuine claimants could lose out. If Work and Benefits’ PIP self-test is anything to go by, that includes deaf and hard-of-hearing people.

2. Deaf education is under threat.
Most deaf and hard-of-hearing people and clued-up partners or parents know that the NDCS are campaigning to preserve funding for deaf children’s services. The fact that they’re having to work so hard to collect petition signatures is a worrying indication of the government’s priorities, especially in light of evidence that a bilingual (BSL/English) education is the best fit for many deaf children.

3. British healthcare is now an open market.
I’ve already blogged about this. Mark my words; it won’t be too long before ‘NHS’ stops being synonymous with ‘healthcare for all’. Already, people have to be re-referred to an audiologist who’s known them for years, while hearing aid batteries are no longer available in local surgeries. Imagine getting left behind in the queue for a CI operation in favour of someone who has more money than you – and blow the consequences for your quality of life. And then what will you do? Go private?

4. Eligibility for Legal Aid has changed.
Before April 1st, 2013, everyone on Income Support or Employment and Support Allowance was automatically eligible for Legal Aid funding to cover cases involving (among various aspects of family law) debt, discrimination, housing, education, welfare, and clinical negligence. Now, new claimants need a household income of £32,000 to qualify, and those getting between £14,000 and £32,000 have to take a means test. Even in discrimination cases, you will be expected to access help via a telephone line manned in three offices across the country, rather than face-to-face solicitor meetings.

5. The quality standards of court interpreting services have been compromised.
Interpreters Anonymous have blogged about this for over a year. In January 2012, the coalition contracted Applied Language Solutions (ALS), now part of Capita Translation and Interpreting Services, to handle all spoken and signed language interpreter bookings for court at reduced hourly rates.
Quality of interpretation has declined sharply since, with many cases thrown out of court due to unqualified and unregistered interpreters, interpreters not turning up, and people being pulled off the street because they happened to have the right language skills. Capita is solely responsible for supplying BSL interpreters in court, yet their website makes no mention of standards, registration with NRCPD, minimum levels of qualifications, codes of conduct or professional indemnity insurance. Even if we could afford to sue for discrimination in court, we’d still be in trouble.

6. The Equality and Human Rights Commission’s funding has been slashed. These people – a merger of the Disability Rights Commission, the Equal Opportunities Commission and the Racial Equality Commission – were instrumental in the drive for anti-discrimination legalisation. Without them, we might not have had the 1995 Disability Discrimination Act or the 2010 Equality Act.
Now, with funds cut from £70 million to £17 million and the loss of an office, they have far less power to push for equality, discrimination and human rights issues on the political agenda than they used to. Who decides on equality issues now? Read on.

7. The Public Sector Equality Duty (PSED) is being ‘reviewed’. With the implementation of the 1995 Disability Discrimination Act (DDA), and then the 2010 Equality Act, measures were in place for organisations to consult on discrimination and equality issues before developing new policies. While not perfect, at least they empowered deaf and disabled people to have a say in how services could be adapted. I should know – I was one of them, giving presentations to roomfuls of mainstream CEOs as part of the Arts Council’s own Disability Equality Duty.
Last November, David Cameron axed equality impact assessments, choosing instead to leave equality and discrimination issues to ‘smart people in Whitehall’. In other words, he’s made it policy-makers’ prerogative to work out for themselves how best to cater for the UK deaf and hard-of-hearing population – without our consultation.

8. It’s implied that the welfare cuts are politically-driven, not economic. Bear with me a little. This report, from the New Economics Foundation, stresses that Britain can afford to borrow and invest its way out of the recession. Over 300 years, we have never defaulted on our debt – unlike Greece, who has built up a history of bad credit in half its independent life. As a result Britain’s borrowing rates are enviably low, but the government chooses to invest less, thus damaging economic growth and protracting the austerity regime for longer than necessary.
Meanwhile, George Osbourne is ordering money-printing at an unprecedented rate (implementing the cuts actually costs money), intending to artificially boost the Bank of England’s account balance and therefore the economy, but of course it doesn’t work, because no-one can afford to borrow from the Bank of England due to the cuts.
Osbourne’s tactics have clearly appalled leading economists, because 63 of them have pledged their support for the People’s Assembly Against Austerity in opposition. (More about this later.)
John Walker, who blogs at Deaf Capital, points out that the Conservatives could be aiming for a totalitarian state. ‘We are seeing the privatisation of public services, an attack on the “precariats” or underclass – including deaf and disabled people – and the creation of a favourable situation where the rich get richer.
‘Some say that due to the sluggish economy we lost our manufacturing industry (ie. textiles) to China, so the devaluation of the pound will make products more attractive, bringing more foreign money into the UK. In order to do that wages have to go down, the poorest have to work for less income, and employment rights have to be restricted. We can then compete with China and bring manufacturing back into the UK.’ The next two reasons suggest that he could be right.

9. The Conservatives want to scrap the 1998 Human Rights Act.
They tried to do this in December last year, but were overturned by a majority of 123 votes, thanks to Labour. Think about it. Once stripped of the basic right to a life free of torture, we wouldn’t be able to exercise political rights or individual freedoms as deaf and hard-of-hearing people against interference by the government.

10. Tomorrow (Tuesday 16th April 2013), the government plans to repeal a vital clause of the 2006 Equality Act. Did you see the blog about this? It seems they can’t wait for 2015 after all.

11. Language rights? What language rights? Right now there is a ‘Spit the dummy out’ Facebook campaign for a BSL Act, which has to be commended for pulling in 11,000 members and hundreds of videos documenting various experiences of being deaf in a mainstream world and the difference a BSL Act could make. Obviously there is a lot of anger over how an entire decade could have passed without the government building on their initial ‘recognition’ of BSL. But it’s also telling how many of the videos revolve around – yes, you guessed it – welfare.

So while I agree on the principle of a BSL Act, all those efforts to get MPs to sign Early Day Motion (EDM) 1167 before the end of this month will go to waste if we don’t focus on the bigger picture now. What is the point of fighting for BSL legalisation without decent welfare, equality or human rights?

Now, you have three options:

a. You can keep telling yourself, ‘Nah, it won’t happen. We’re not China,’ until it’s too late.
b. If you’re an investor, you can take MoneyWeek’s scaremongering advice and invest in gold bullion. (Then again, what would be the point? In the event of financial collapse, wouldn’t that be confiscated anyway?)
c. Or you can join the People’s Assembly Against Austerity – link here: www.peoplesassembly.org.uk

Communication support is being organised, and I shall be co-ordinating a group. Your involvement is required to make this happen. The People’s Assembly will not be able to support us if we don’t come forward with our own concerns.

UPDATE: In the three years since this blog was published, things have got worse, with cuts continuing to fall and the election in 2015 of a Conservative government. Two Deaf schools have closed swiftly. The People’s Assembly has organised another anti-austerity march on Saturday 16th April 2016, and there is a Deaf Bloc – more details here:

https://www.facebook.com/events/1744875752415280

The NHS: why the coalition’s reforms are an atrocity

I have a kidney infection. This is my fifth day.

I am able to say that with certainty, because I visited a NHS general practitioner and that’s what she diagnosed me with. When I first felt the stabbing pain in my lower left backside, I texted 999 for NHS paramedics, who came and assessed me in a matter of minutes.

The GP gave me a NHS prescription for a seven-day course of antibiotics and advised me to try and get plenty of rest, and she achieved that on the basis of strategic questioning, a thorough physical examination and an urine test.

All of which was done in the name of public duty – paid for entirely by the state.

Now, imagine if the NHS had already been privatised a few years hence. At what point would I start paying? If the government continue with their plans for an American-style healthcare system, that might be covered by health insurance. (Note that the NHS do charge for a few services, but measures are in place to ensure free treatment for those on low incomes.)

What if I couldn’t afford the insurance? I am a single mother already setting aside a large chunk of my time for two children under the age of four. As my older child Isobel and I are disabled and deaf respectively and claim DLA, we look set to join around 3.7 million people with disabilities potentially affected by £28 billion of welfare cuts over five years. What if the diagnosis was wrong? What cost my health then?

Yesterday – with little media forewarning, and certainly no public consultation – the coalition launched a new medical commissioning board. Nothing unusual about that you might think, except that this board is being encouraged to buy services from a healthcare ‘open market’ – both public and private – with NHS funds. What makes this scary is that the public services do not have the acumen of the private businesses and so stand a good chance of being edged out of the market altogether.

Meanwhile the private sector will certainly find a way to undercut their rivals every time, because as far as they are concerned, the NHS represents a highly lucrative slice of the healthcare pie.

Imagine a medical system increasingly driven not by public duty, but commercial gain. Imagine being treated according not to the severity and/or complexity of your medical condition, but how much money you have.

Isobel has quadriplegic cerebral palsy, epilepsy, global developmental delay and microcephaly. Where does that leave the extensive range of NHS equipment, therapies, medication reviews and assessments that she will need to accommodate both these evolving disabilities and her Conductive Education? Where does that leave me and my kidney infection, in the event that my urine test reveals something else?

No private medical company can compete with the NHS for size or bureaucracy. In light of both this and their greater interest in making a profit, how can the private suppliers maintain the same quality standards or even range of services offered by their more experienced public rivals?

Hearing aid and CI costs run to the tens of thousands. I have had NHS audiology all my life, utterly free. I cannot deny the quality of life my hearing aids, and later my CI, have given me. The one time I had a hearing test with a private hearing aid dispenser (before I had my CI operation), their equipment failed me, because it had only half the decibel range of the NHS. Quite simply, their services didn’t extend to profound deafness. Now privatisation is well under way, how can we guarantee we won’t see that happening on the NHS as well?

Sooner or later someone will decide to charge an ‘administration fee’ – and from then on, there will be no stopping them, because they have no obligations to public duty. Will there be a postcode lottery?

The tide of doubt keeps coming in, because the lack of public consultation ensures that there is no knowing the lengths the private sector will go to for the sake of a profit. Just look at how close the coalition’s links to them already are.

Bureaucracy notwithstanding, the NHS is the envy of the world for fast and effective healthcare for all. A Commonwealth Fund report proves that its standards are better than those of private healthcare provision in 11 countries including Australia, New Zealand, France, Holland, Germany, Italy, Norway, Sweden and the US.

Even the American President is trying to drive legislation for a system similar to the British model in his country; that’s how good the NHS is. Why do you think the familiar blue-and-white of the NHS logo was such a feature in Danny Boyle’s bombastic Opening Ceremony in the London Olympics?

I know I have had my gripes about certain aspects of the NHS. No medical system, private or public, can claim to be perfect.

I do not wish to undermine existing clinical negligence claims against individual NHS hospitals or trusts. But these are as a result of over-stretched resources and cumulative budget cuts made by the coalition – and preceding governments going all way back to Thatcher – rather than capitalist greed. That the NHS tops a Commonwealth poll today is testimony to the admirable efforts they are making in the face of such cuts. As far as incentives for a British healthcare ‘open market’ go, you cannot get more machiavellian than the one sought by the present government.

The very existence of the NHS underscores the principle that access to good healthcare is a right, not a privilege. This is why it is a cornerstone of British democracy today – and why the coalition’s NHS ‘reforms’ look like an atrocity.