Imagine a world where your child does not have their basic needs met at school. You turn up one day and the staff explain, very politely and regrettably, that they cannot do what your child needs today. Would you smile back? Say that’s okay? Leave your child anyway and head off to home / work as normal? This is what the parents of disabled kids are expected to do every day.

Imagine that your child is told to stop communicating. The books are all removed from the library. The next day, there are no pens. You are reassured that the pens will be provided but only once every 6 weeks. The school does not have budget for your child to be able to communicate or learn. Core equipment, an eye gaze which allows children to communicate through eye movements, or an iPad which provides a voice for so many – not funded because there is no money.

Just imagine your child after lunch being told to sit in a corner and not take part in the class. Observe, yes. Take part, no chance. You see, there is only funding for a part time 1-2-1. Even if your child happens to have medical challenges or a lack of safety awareness, well we will take our chances rather than overspend. After all, it’s okay in the morning and that will have to be good enough.

Now, your child’s feet have grown. Clarks is available to you (other shoe shops are available) but not for at least 6 weeks. You have to squeeze your child’s feet into shoes for at least 6 weeks and by the way, you need to attend 3 appointments, all at short notice, in the middle of the day and parking costs £6 a go. Oh and be grateful you don’t have to pay for the shoes.

Imagine that you start work at 8.30am and go to drop your child at breakfast club to be told that it does not exist. Not only that, but there is no childcare at all available around school hours. In the holidays you might be offered 1 day a week – school hours only of course.

Children with different abilities will have (usually after a long fight) either a statement of needs or what is now an Education, Health and Care Plan (EHCP). This outlines the needs of each child and forms a legal requirement for provision. Unfortunately, there are 2 major issues. Firstly, the true needs of a child are rarely properly documented leaving gaps. Secondly, even when the needs are documented, they are not always provided. Parents will fight for the correct provision and as a result are labelled as ‘difficult’ or ‘tiger parents’.

My daughter has an undiagnosed genetic condition – known as a Swan. (Syndromes Without a Name). I have therefore become one of the ‘difficult parents’ who is continuously fighting for the basic needs of my child to be provided. I don’t want to be difficult and neither do others, but we do want to be heard. Britain in 2016 needs to think differently and we need you to help us shout it out.

If you would like to help please feel free to RT to the following people:

@PennyMordauntMP (Minister for the Disabled)

@EHRCChair (Chair of Equalities and Human Rights Commission)

@Sajidjavid (Minister for Local Government and Communities)

@JustineGreening (Minister for Equalities)


Blogfest16 and the Swan Bloggers

Last Saturday, I attended the Mumsnet #Blogfest16 – my first experience of such an event and I loved it. A room full of inspirational, world changing and passionate (mostly) women – all of whom are bold and brave in sharing their life experiences online, for the greater good. In describing why I came away so bolstered and enthusiastic, I have given many examples from informative sessions, to truly hilarious stage shows, to a range of fab ideas for how I can be so much better as a blogger.

However, if I am completely honest, the main reason I had a great day, rather than a good day, was the amazing group of Swan bloggers who also attended.

swan-uk-image(Swan UK = Syndromes without a name)

I have come to think of the Swan bloggers as fabulous virtual friends – I have met some of them once or twice, others I met for the first time in person at Blogfest. Yet I am more honest with this group than many others in my life, and it feels immediately comfortable to be in their presence. I care passionately about what is happening in their lives, I shed tears of sadness and laughter on a regular basis reading their blogs, I truly appreciate their encouragement, honesty and support with my own writing. Being part of a group that is – bit by bit – changing the world for Undiagnosed children is incredibly empowering.

I loved the way that as a group, we were rooting for the amazing Liz with her ‘Are you Kiddingney’ blog to win the best campaigner award. An incredible talent, read more here…..https://areyoukiddingney.wordpress.com/.

I loved the way the group interacted with others – open minded and open hearted. I was proud to be part of a recognised group, with others commenting on how supportive and non judgemental this lovely gang is. I loved the fact that when unable to spot anyone I knew (I am known for my inability to recognise others in large crowds), a fellow Swan blogger spotted me and pointed me back to the herd. Most of all, I loved the fact that I laughed so much, despite tackling some tough topics, this group is so much fun to be with. And, as it turns out, a few of them share my penchant for too much wine….cheers ladies!

To find out more about Swan UK click here….https://www.undiagnosed.org.uk/

To read more Swan UK blogs click here….https://www.undiagnosed.org.uk/news-events/

An ode to #changingplaces #dignity #phantomloos! 

There are less than 1000 #changingplaces in the U.K. despite this being the key barrier to disabled children and adults accessing every day activities. Just imagine not being able to go to the loo in a dignified way when out of the house. This Halloween please share this poem to raise awareness of #phantomloos……

An ode to #changingplaces

Now every parent will tell you of nappy changing horrors,
We empathise and laugh together at the highly amusing stories,
I, too, join in the fun, giggling about poo and wee,
But as ‘Gorgeous Grace’ gets bigger, it has stopped being quite so funny.

So, where haven’t we changed her nappy is probably easiest to start,
Too big for ‘baby changing areas’ – most common place now is the car,
On the grass if the weather is fine, it’s not really dignified,
But the worst by far, the public toilet floor, it leaves you horrified

We don’t have too many choices, unless we stay home all day,
We went to France, had a lovely time, until there was a poo on the ferry,
‘Non, vous cannot use zee medical room’ the toilet floor will have to do,
But it’s filthy, there’s no privacy, I just want to protect you.

The playground, café, supermarket, shops, they all present a challenge,
The soft play area, swimming pool, it really makes me cringe,
For now, GG is not too fussed, just wriggles to make it ‘more fun’ 🙂
But what about later, she’s getting bigger and won’t want people looking at her bum.

The frustrating part is that people don’t want to help, no-one seems to care,
Instead they walk on, avert their eyes or even worse they stare,
It’s not a lot we’re asking for – just a changing place,
The gauntlet laid, the challenge set – who will provide that place?

Is there any help out there?

Over the past year, GG has started to struggle with her behaviour and it has become progressively more difficult. It has been incredibly challenging at times with full on meltdowns – and no, I do not mean a toddler type tantrum – I am talking about complete loss of control, repetitive aggressive / dangerous movements, screeching that must hurt her throat and an inability to be distracted at all. Occasionally GG is hurting herself despite our best efforts to keep her safe. Anything from 15 mins to an hour is typical and it breaks my heart.


Wrapping GG up into a huge cuddle, using deep pressure and singing repeatedly is the only strategy we have for these situations. It has a varying degree of success but at least keeps her safe and if I am honest the singing helps keep me calm too. However we are very aware that we won’t always be able to do this – already a tall 6 year old, for a child with low muscle tone and hypermobility, GG is incredibly strong when determined.


Of course where are my other kids when this is happening? Looking after themselves is the answer – the amazing big sister watching over the well behaved younger brother, both knowing that staying away is safest and so wonderfully bringing GG her favourite blanket and an apple that can so often provide a comfort – but at times is thrown back in their faces….how to explain that GG cannot help it? How to ensure that they know GG loves them and treasures them and in that moment she is not herself.


It is difficult to admit you need help with behaviours. I felt a failure that I could not manage a 6 year old, that GG who most people see as the truly adorable giggly girl she is, could prove such a challenge at home. I found this really difficult to vocalise. However we needed help and that is what I sought – rather unsuccessfully….


Avenue 1: School – Of course GG’s behaviour in school is impeccable, brilliant in fact. That means we don’t get any help with issues at home.

Avenue 2: GP – Try school. Umm did that. Oh.

Avenue 3: The amazing Swan networks – they came up with the most promising options, our Learning Disability nurse (doesn’t exist here), the challenging behaviour foundation – a fab website with loads of resources but you need a group of 10 to access any workshops. Educational psychologist – ah yes but they are attached to school – see point 1.

Avenue 4: School nurse – suggested CAMHS – we explored that option. The first questions were around drug use, alcohol abuse and underage pregnancy. Clearly not quite the right forum for GG.

Avenue 5: Paediatrician – suggested the school nurse and to look at the ‘Local Offer’ – this did lead to the discovery of a great resource online but nothing which fitted the bill (I’ll return to ‘the bill’ shortly)

Avenue 6: The Care Commissioning Group (CCG) – yes I resorted to meeting with the CCG team to try and understand where in the jungle of LA / NHS provision did learning disability behaviour support sit. The answer ‘we don’t know’.


In the end we racked up another impressive bill by seeing a private educational psychologist – money well spent as it has helped so much but it should not be necessary. A full and proper assessment of the extent of GG’s learning disability – it hurt to hear, I shed a few tears but it helped us to understand. We can now distinguish between misbehaviour and anxiety – we had not realised how anxious GG can be, reassurance and understanding has helped our gorgeous girl so much. Tactics for turning aggressive behaviour to her siblings into fun, enrolling GG’s siblings in how to do this proved a great move. This has started to really help life at home.


If you’ve made this far you might like to indulge in a little light relief – in a kind of, if I don’t laugh I will cry kind of a way – here’s my favourite selection of comments I have heard this summer….


‘You’re a bit big for that buggy’ (Random stranger in pharmacy) – that’s right GG up you get and walk!

‘The rest of us have to get our own kids to school’ (SEN transport team) – uh huh, not quite the same though is it, oh and BTW I get my other kids to school all on my own, grrrr.

‘But all kids have meltdowns – are you sure she isn’t doing it for attention’ (Another mum) – that’s right, in order to get attention my daughter needs to pull out her own hair…..

‘Have you tried the naughty step when she is in a meltdown?’ (Well meaning friend) – now why didn’t I think of that, next time GG is out of control clawing to get out of my grasp, I will sit her on the naughty step, that will fix it right?

‘Honestly – my (neurotypical) daughter is just like that’ (A less known parent) – no, really, just no.

‘So how are you coping Mum? It’s important to look after yourself’ ‘(GP) – silent screaming in my head as no practical help is offered.


Needless to say it has been a summer of wine, a ‘few’ G&Ts and a whole load of chocolate J


Dear Mrs May….

EU pic

Dear Mrs May…..Firstly I would like to extend my congratulations on your appointment as Prime Minister. I am of course aware of the significant challenge you are now facing in leading the UK through the separation process from the EU.

I am contacting you now, to ask that as part of this separation process, that the relatively small –  but very important – rare disease and undiagnosed community are considered.

I am the mother of a child with an undiagnosed genetic condition – one of 6000 unique children  born every year. There are many more diagnosed with rare diseases. The EU has made rare disease a strategic health priority, and its’ influence in this area has been significant.

You may already be aware that the UK is the centre for genetic research for rare diseases and I can only assume that we will lose this status in due course. These genetic research programmes are the hope we have for a future diagnosis –  which is our only chance of a prognosis, potential treatment and maybe prevention in future generations.

There is a high level of anxiety in the disability community, that is amplified in the rare disease and undiagnosed community, as we face the possibility of losing the significant EU investment in this field. For many of our community, we fear there will simply be too few affected patients in the UK to justify the investment required.

The key benefits of the EU focus in this area to date are:

  • Collaboration across borders and critical mass for an otherwise small population
  • Shared skills, resources and information – including access to niche experts across all countries
  • Research funding (otherwise cost prohibitive)
  • Medicine authorisation across the EU (otherwise cost prohibitive)
  • Innovation and knowledge transfer permitted by European Directives
  • Health benefits for those in the rare / undiagnosed community

I appreciate it is too early to begin to understand the full implications of Brexit. However if consideration can be given to protecting some of the critical work in this area, it would be of significant benefit to this community.

I, and many others, sincerely hope that you will give this full and proper consideration.



An Ode to a Special Dad

He’s the one she calls for, the Daddy she adores,

The one that she runs to, the minute she hears the door,

Daddy is her hero, he makes everything ok,

When he’s home, we’re altogether, she likes it best that way.

It’s not an easy job being Daddy to any child really,

But when they’re extra special, it becomes even more tricky,

The Dad is often the forgotten one, no-one ever thinks to ask…

How are you feeling? Coping? You always maintain your mask.

Behind the scenes you are vital, the one who holds us all together,

You’re the voice of reason, always there when I’m at the end of my tether,

You’re the one who calms us, makes it ok to just be,

But equally the Daddy who will fight every battle for his family.

How many times I catch you, that adoring look in your eyes,

So torn, so incredibly proud – holding back tears, trying not to cry,

Though she can’t quite say ‘Daddy’ – it gets muddled with her ‘blankie’…

It is with you, her hero, that GG is most happy.


  1. EU pic

I am aware that this is an emotive and challenging subject and I may regret writing this post. However,  there is limited transparency about the impact of an exit from the EU  – probably, because no-one can really know. With a couple of weeks to go until the EU referendum, I am disappointed at the lack of clarity and scaremongering both generally, and in the disability community, from both the leave and remain campaigns. I have also struggled to understand the role of the EU in rare disease which in our case, with GG remaining undiagnosed, is particularly important.

I am no expert on this topic – this is simply a summation of the information I understand to be true, combined with a few of my own views.

So here goes….


This is tricky, technically our laws are domestic and not European, however as a member of the EU we have to comply with European Directives. In theory UK law does not change  if we vote leave, however the question is to what extent does the EU provide an extra layer of protection that stops the UK Government from weakening those laws.

Recent legislation including the Equality Act 2010 (which replaced the Disability Discrimination Act) is derived from European Directives. It is highly unlikely that these would change in the short term, in fact they could remain forever. However, being outside of the EU would give the Government the opportunity to move away from the principles established, and future UK law could move in a different direction. I want to say that I don’t think that would happen, but given recent cuts to basic services for the disabled, it is entirely possible that over time legal protection could diminish.

An important clarification is that the European Court of Justice and the Human Rights Act do not form part of the EU. The European Convention of Human Rights includes both non EU and EU countries, which means that leaving the EU does not mean abandoning these. The European Court of Justice decisions to date would remain valid in UK law, however it could change with time if the UK Government decided to.

In summary. probably not much will change in the short term and maybe not even longer term. However my instinct is that we are safer staying in – my experience is telling me that the EU is more likely to preserve and extend protections for the disabled, given their track record on social reform, than relying on the current UK Government.


In the short term there is no question that the uncertainty of a leave vote will cause an economic dip – the only thing both sides agree on. Whether this will be a full on recession or a short lived dip is impossible to know. Maybe in the long term, economically it will be better, maybe not.

One thing is sure – if the result on 23rd June is an out, we will see an immediate negative impact on the economy and I ask you this – can we stand by as there are more cuts to disability and carers allowances? Can we see more special needs schools fundraising for vital basic equipment no longer funded? Can we allow more parents to have to fight for the statutory provisions in ECH plans which Local Authorities and Care Commissioning Groups simply do not have the funds to provide? Can we take anything more away from the NHS? Can the undiagnosed community cope with an even poorer level of co-ordination of care? The answer has to be a no.

If I hear one more argument that Norway has fabulous health and public services and therefore ‘out’ is best, I will explode. The reason Norway has a fabulous level of service provision is simple. They pay on average 42% of all income in tax. They respect the fact that paying tax protects them and others, and evens out the imbalances in society, ensuring everyone has a good quality of life. We however live in a land where even our Prime Minister who has loads of money, dodged inheritance tax. A paltry £40k in his world – another teacher in a special needs school in my head. Fundamentally our culture is broken at the top and that is why damaging decisions on services are allowed to be made.

You only have to read the newspapers to know that cuts made over the past half a decade have disadvantaged the disabled more than most – 19 times more than the general public according to the UK Centre for Welfare Reform. Outsourcing of the NHS bit by bit, the Southern Healthcare scandals, the high level of avoidable epilepsy deaths – none of these is attributable to the EU but a further economic hit will increase the occurrence rates.

The undiagnosed community already suffer from disconnected and unco-ordinated services, the fact that we do not fit in a box makes it harder to access care and support. Further cuts will only make this harder for those lacking a diagnosis. Read here to find out more – Out of the Box

The other factor to consider is the widely debated impact of ongoing EU migration. A high proportion of EU migrants are working, fulfilling critical roles in our country and keeping our economy standing – a very low proportion are claiming benefits according to the DWP – although precise figures are unknown. This means that EU migrants are contributing through tax and NI so in theory the additional people are funding additional services. The reality is that money is being sucked up elsewhere and not invested in expanding the services to support this wider population. Migrants are easy to blame for all ills, personally I do not buy it.

Another hit to the economy, regardless of short or long term will lead to further cuts to services for the disabled. More cuts leads to less help, services that are stretched to breaking point and ultimately more deaths – short term or otherwise this is a worrying prospect.


This is where I become completely convinced that ‘in’ is best. GG like 6000 other children born every year without a diagnosis, will cease to benefit from a wide variety of EU mechanisms that are furthering rare disease research and ultimately leading to that much needed diagnosis.

The EU incentivises member states to undertake research providing funding to Universities, health care providers and private organisations working in this field. Under the umbrella of the EU, the UK is working across borders to research, develop and find treatments for rare diseases. The EU has listed rare disease as one of 23 health priorities stating that there is a need to incentivise and promote work in this area, which is otherwise cost prohibitive to individual member states and pharmaceuticals. The European Medicine Agency is based in London and its work helps to ensure that the UK is towards the top of the list for investment in drugs.

The framework of the EU allows researchers and policy makers to share data which would not otherwise be possible. It is only through sharing data that the patterns and trends which allow the identification of rare diseases – the diagnosis so many await. In some cases cross border treatments are made possible through the EUs work

The UK plays a key role in genetic and rare disease research. This work may not completely stop if we leave the EU however it will lose EU funding, the opportunities to collaborate and the input of all member states has to be better than just one. Our ability to influence rare disease policy and benefit from the EU approach will significantly diminish.

For GG, this would be catastrophic to step away from the one thing that gives us hope of a diagnosis, a prognosis and possible future interventions to improve quality of life.


On every special needs parent forum, there are true and very distressing tales of disabled young adults, at the age of 18 years being moved away from their families. The law in the UK (and not the rest of the EU as far as I understand) currently means that at the point of becoming an adult, the family who have cared for their disabled relative since birth, are in the hands of social services often unfamiliar with the young person’s situation. Where the disabled young person concerned can communicate their wishes, this is also at times over looked.

Leaving the EU means that the ability for us as a family to leave the UK and move to another EU country, to ensure that GG can remain with us – for as long as we are able to look after her and for as long as she wishes – becomes more complicated. Probably cost prohibitive.


  • Memories of the two world wars…..

I will not be alone in recalling the horrors of stories passed on from grandparents – this was not so long ago. I personally have always felt the EU provides a comfort blanket against a repeat of the horrors of the first half of the 20th century. An institution which was able to forgive, forget and rebuild, with collaboration at its’ core. Today’s threats come from both further afield and from within, and I cannot understand how standing alone against terrorism can possibly be better than standing together. Imagining the UK in the same situation as Paris and Brussels, I would like to think that unity will conquer.

  • The prospect of Donald Trump as US President….

The man is clearly bigoted against anyone who is not an able bodied, white, American male. I personally did not believe he stood a chance until New York voted for Trump – one of the most vibrant, diverse cities in the world and they chose him. The prospect of exit from the EU equating to closer ties to a US run by Trump is, in my view, one of the strongest arguments for voting in.


Well done if you have read this far and thanks for sticking with it. I do not profess to have all the answers, however for the elements that are most important to the undiagnosed and wider disabled community, I cannot help but feel that remaining with the EU is best and at the end of the day what’s best for GG will always get my vote.


There will be a special needs school near you with a PTA or a School Association that will welcome volunteers with open arms. WE NEED YOU!

 After a year on the equivalent of the PTA at GGs special needs school, I find myself compelled to put pen to paper and try to describe the difference between this and a mainstream PTA.

I have always been an active mum who enjoys playing a role on the various committees associated with my children and their schools. This coming weekend I have managed to rope myself into running a Lego stall at the Spring Fair at my eldest child’s primary. In two weeks I in charge of salad at a school BBQ – a daunting responsibility….!

When I volunteered to join the the special school fundraising committee, I figured that I knew the score. I could attend a few meetings, support a few events and go home with that glowing feeling of having done something useful. Having completed 3 years on a committee for a pre-school where the livelihood of the staff relied on our management skills, I was pretty unphased when asked to take on the role of secretary. Agendas and minutes I can do, plus churning out a few thank you letters as needed –  no issues at all.

The reality however is a world apart from my previous experiences. When you are faced with the decision of providing specialist seating for a child as the Occupational Therapists have run out of funds for this year vs. paying for IPads that will allow a child who cannot otherwise communicate in class to take part in lessons – you find yourself torn and reaching to your own pocket in desperation – in my case usually to find a snotty tissue and a few 5ps.

It is heart wrenching to spend months organising a school Christmas fair, to find that of the 40 odd families at the school, there are several children too ill to attend, parent volunteers dropping out at the last minute due to hospitalisations and in the end you manage to raise a few hundred pounds. I have never been to a meeting where the requests for funding are under several thousands. Just keeping the minibuses on the road costs £4000 per year.

I know I am in danger of stating the obvious here but if you think mainstream school staff are stretched – take a look at the special needs school staff. If you think mainstream parents are time poor – just read some of the many fabulous blogs about being a parent to a child with needs so complex, they attend a special needs school. Add those two together and you are left with the resource that has to fund vital equipment for a school that is desperately under-funded. The maths does not add up and it is soul destroying.

We are extremely fortunate to have occasional funding from the Rotary Club and other local fundraising groups. However when we nominate the special needs school to be charity for the local car rally or sports event, there is always a need to provide a band of volunteers and we simply do not have the numbers.


So my call to action for anyone with a little spare time on their hands – there will be a special needs school near you that would welcome you with open arms. Be prepared for some tough decisions but nothing matches the sense of satisfaction when you see the kids on the bus, off to their therapies and knowing you helped to make that possible.

Welcome to ‘No Man’s Land’ #Undiagnosed

No Mans Land

There is a well known essay called ‘Welcome to Holland’ that many parents of those with disabilities feel they can relate to. There is a link to ‘Welcome to Holland’ below for those who are not familiar.


For those in the undiagnosed camp, it feels less like ‘Welcome to Holland’ and more like ‘Welcome to No Man’s Land’. Those in Holland set off on a journey that has ended somewhere definite – accepting that it is not Italy as they had hoped. Without a diagnosis, no explanations and no label, we have all landed in limbo, we are in No Man’s Land.

So what does it feel like in No Man’s Land? Well to begin with it is a very lonely place. We were supposed to go to Italy. Then we were diverted to Holland but Holland won’t let us in. We don’t belong, our Passports lack the correct stamp to enter the country. We are stranded.

It is confusing and there is nowhere to turn. Professionals are baffled at the lack of a box to put you in. They pop over from Holland and try to help but ultimately the country is not set up for those without a diagnosis. Service providers struggle with the lack of a name to put on the form. Geneticists review your conundrum of a child, they sometimes become excited by the challenge. They confirm that you do not belong in Italy and neither do you belong in Holland but they cannot tell you where you should go. There is no guide book.

As a parent, you research all of those diagnoses you can see over the border in Holland, sending the geneticist name after name of potential syndromes – only to find they have all been ruled out. It is unlikely we will find our answers on google but we try. We have no better options.

Then comes the ground breaking research programmes, the hope that these might give us access to Holland. We willingly give our samples and wait, hopeful of an outcome. For some there is success and they grab their passports and flee across the border to face a new set of challenges. For others there is no answer and we join the next research programme. We peer over the border and wish we could reach Holland. We wistfully dream of Italy and we share the ongoing pain of those in Holland that we will never go there.

In the meantime, we carry on with life. We battle to co-ordinate care for our little ones despite the lack of joined up medical records. We fight for services that are not geared up to cater for those without a label. We join with Holland to campaign for better services for all disabled children, whilst flagging the extra layer of complexity that specifically affects us in No Man’s Land.

We also after a while learn to live life and enjoy what we have. A diagnosis is the aim but in the meantime, we enjoy our precious children and the joy that they bring. The small steps forward are extra special as they were not expected – no prognosis means no limits. The beautiful smiles and giggles that melt our hearts and we are grateful for the richness our children bring to our lives – regardless of the country we live in.

We also meet a whole new group of people. Despite 6000 children every year being born without a diagnosis, we are a relatively small community.

 Swan UK are the lifeline for those in No Man’s Land. We need this group and funding is at a critical junction with some big grants ending. My one request is to help support Swan UK to continue running and supporting the 1000 families already signed up, as well as reaching out to the 1000s of other families battling in isolation.

If you would like to donate to support the work of SWAN UK you can do so via the Just Giving page or our Virgin Money Giving page. You can also donate by texting SWAN11 £3 (or any amount up to £10) to 70070