Frustration, swearing and tears….

The biggest myth of all – the support for disabled children is good.  Adequate is a massive overstatement. Naively us special needs parents, anticipate that the care will we need is there. At the start – still in shock, we navigate our way through, expecting that at some point it comes together. It hasn’t happened yet.

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For us, physio was the first non-hospital based support we accessed. Not rolling, not sitting, can’t even straighten her legs, we need help. From referral to the first appointment it took 3 months. Let me say that again – 3 months. How old was GG? 6 months old. We spent one third of her precious life waiting for that first appointment.

At last the day arrived, we were optimistic, nervous but hopeful of some support. A 3 month wait and a very hassled and over worked physio spent 30 minutes with our daughter. Let me say that again – 30 minutes. After a 3 month wait. When we will see you again? The desperation in our voices, greater than in the famous song. Perhaps a month, maybe 6 weeks. Keep doing the exercises I showed you. We are flummoxed, novices, lost in a scary world with no help. Turns out that every 6 weeks would have been a dream, 4 times a year has been the average. We spend on average £1500 per year on private physio. Not everyone in the same situation can.

Weight gain is poor, solid food cannot be managed – all her peers on baby led weaning, I frankly want to swear. I do. Appropriately, Speech and language is the referral made (SALT in SEN lingo), they can help with eating. We wait for 2 months. Nothing. We self refer to a private SALT and are seen weekly for 3 months before we get an appointment. We waited 5 months. Our baby was not gaining weight and we waited 5 months for the original appointment.

Next was the Occupational Therapist (OT). We needed stuff – equipment, standing frames, special seats, advice on car seats – the physio said we needed stuff but we had to go back to the consultant for a referral. The referral was made when GG was just 2 years old. The first OT we saw was when she started school at age 4.5 years. By this point we were no longer surprised. Disappointed yes, but not surprised. In the meantime, we got stuff – we bought it from SEN sites, we researched car seats and found one that worked. Alone again.

Alone The common thread to all of these referrals was the lack of diagnosis. Every therapist asking us ‘what is the medical condition?’ – we don’t know. We have been told we may never know but we struggle to believe this. We live in the UK, post 2010, surely we will find out one day soon? More than 5 years into our journey and still no answers. It turns out that no label = more hassle. Professionals do not know how to deal with those who remain undiagnosed. Even at times told,further support will be looked at once a diagnosis is confirmed. We are in limbo.

It is incredible that we have to ask and fight for these services. Incredible that we were not referred at the first point of contact. Incredible that one therapist cannot refer to another and we have to start from scratch. Incredible that we have to justify our need for the support because we do not fit into a box.

For context, I have described 3 out of 24 non-medical touchpoints that we have or will need to access in the future. This is the reality of how unco-ordinated and under funded services are.

Out of the Box

The frustration, swearing and tears have eventually resulted in a pro-active and positive effort to make a change. 6000 children are born each year with no diagnosis. Many many more, with a diagnosis, will still suffer from the lack of co-ordination. Please support #outofthebox Out of the Box

 

#undiagnosed should not be a barrier. Please support @swan_uk who provide a lifeline to those with no diagnosis.

*Each individual therapist has tried their hardest to help. This is no way reflects on the individuals but the system. More training on #undiagnosed is needed to avoid delays in services because of a lack of a label.

Swan UK have provided a lifeline to all we have faced in the past 2 years. 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


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LOOKING BACK, LOOKING FORWARD #UNDIAGNOSED

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A year ago, on Undiagnosed Children’s Day 2015, I took my first tentative steps into the world of Twitter Takeover for Swan UK. It was a daunting as a newbie to the world of blogging and Twitter. The overwhelming support on the day resulted in a baptism of fire as #undiagnosed started trending, and the Swan UK feed was impossible to keep up with. It was a fantastic day, knowing that so many people cared, and that we reached so many with the message that #undiagnosed remains a significant issue in the modern medical world.

I continued to blog for a couple of months and through the year, hosted a few more Twitter Takeovers, but found myself struggling to keep publishing despite continuing to write posts on a regular basis. Partly this was down to everyday life. As with all families we have experienced ups and downs, the challenge and joy of 3 young children, with the additional complexities of a child with an undiagnosed genetic condition. Add to this some challenging work situations and I found myself eager to pursue the campaigning but struggling to find a way.

In the autumn, I was thrown off course by the ‘Almost Diagnosis’ (further details in a previous blog The ‘Almost’ Diagnosis) – so close yet so far from finding out the cause of GG’s challenges. Although the ‘almost diagnosis’ is still not ruled out, we are awaiting cardiology and orthoptic reviews, (8 months after referrals were made, grrr) – it remains an unlikely outcome. The ‘Almost Diagnosis’ did however prompt a key question – we know that GG suffers from a rare disease so what difference would a diagnosis make?

I accept that lots of things would not be any different – the constant seizure watch that has me sleeping with one eye open, focused on the video monitor. The addition of another issue to the list – uneven leg length. The myriad of appointments, the challenge of getting into school to meet with teachers and therapists and the increasing behavioural challenges to manage. Please don’t get me started on the battles to get GG into out of school activities – so simple for the majority and yet so hard to find acceptance for GG.

However some things would be different. The lack of diagnosis and associated lack of prognosis means that we did not anticipate a leg length issue, we were not looking for it, a diagnosis may well have told us what to watch for. The knowledge of whether this is a hereditary issue that could affect future generations, that could have opened the door for us to have another. A personal outcome I hope for, would reduce the guilt – I made GG in my body so I will always be responsible, however to put to bed those thoughts which linger in the early hours, was it the blue cheese I ate before I knew I was pregnant? Did I do something else to cause this?

In the past year, the continuous and repetitive assessments for support have continued – we do not fit into a neat box that dictates the support we need. We successfully negotiated our way through the transition from SEN nursery to SEN primary – a journey that was far from seamless. The battle that followed to secure appropriate school transport was another saga. The annual Disability Living Allowance review – often awarded for 5 years to those with a diagnosis – another 42 page form plus appendices. Even down to the box marked ‘medical condition’ to obtain a Queue Assist pass at a theme park. All would be easier if we had a name. As one wise and respected disability lobby group wrote ‘a firm medical diagnosis is hard to ignore’ – and the lack of one creates reason for doubt.

The one upside of no diagnosis is being a part of Swan UK. It is by far the best support group I have been a part of and I have tried a few. 24/7 support from others in the same position, always someone to listen, always someone to celebrate the successes, we are in this together. In the past year, Swan have ensured we are fully informed about the opportunities for diagnosis – incorrect info from professionals that we have been able to challenge – thanks to the knowledge of the staff and other families. We have met with other families, enjoyed an awesome day out together which would not have been possible without Swan UK.

Mostly though, Swan UK has inspired me to try and make a difference. Thanks to a bloggers workshop in the New Year, the collective brains and passion of those in the room gave me the impetus I needed to start a campaign for co-ordinated care. I have no campaign experience, I am a working mum with an incredibly busy home life but determined to try and make a change.

I have recently launch #outofthebox (Out of the Box) to try and improve care for those with #undiagnosed conditions. I have rediscovered my mojo, I have a purpose and I have an amazing support network who give me honest feedback and incredible input.

I will however finish with some positives in the past year, steps that are miniscule to most children but to GG have been significant. Firstly, GG is drinking more, still not enough, but we no longer battle to get tiny amounts of liquid into her. We now have c.80% success with daytime toileting, a phenomenal life skill to achieve. Gross motor skills have progressed well and GG has discovered a love of singing – the most beautiful sound. I have succeeded in finding swimming, horse riding and a Rainbows group that are now welcoming GG with open arms and recognising the contribution she makes to the class. Seeing GG swim independently with a woggle is my memory of the year.

So what next? In the next 12 months our hopes are to discount the ‘Almost Diagnosis’ (all fingers and toes crossed….) and be moved onto the 100,000 genomes project as the next leading research programme. Although likely to be a long lead time, it is the best chance we have of finding a diagnosis. We will battle the transition from ‘statement of educational needs’ to EHCP and we will get the support GG needs. I hope to make an impact with the #outofthebox campaign and influence policy makers to spend their money on care and not repetitive assessments. I plan to investigate therapies to help GG with sensory needs in the hope of helping with behaviours. I may even get brave enough to face the application process for respite care. Mostly I hope to continue to enjoy my fab family, my gorgeous GG and keep everyone as healthy and happy as possible.

Swan UK have provided a lifeline to all we have faced in the past 2 years. 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

Happy Undiagnosed Children’s Day 2016!!


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