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Health care and Transition

24.01.18

When it comes to health care and transition, the process (and the age at which is begins) can vary enormously for families. 

In this latest post in our blog series on Transition, parent Michelle outlines her personal experience of transition.

What a difference a day makes

Transition can be a difficult time for families of a disabled or vulnerable person, as the care their child has received for many years is turned on its head once they leave children’s services and enter adulthood.  The age can vary too, with some families experiencing a smooth process and others less so.

Transition is described as “The purposeful, planned process of preparing and moving young people and their families or carers from child-centred healthcare to adolescent or adult orientated healthcare” (adapted from Blum et al, 1993).

But how does it feel to parents who find themselves in a new, unfamiliar system where everything is very different?

Day one, eighteen years and 364 days old… still waiting

Also, the amount of time we had spent in Children’s Services…

I wouldn’t want anyone to think that it had all been a breeze, but we had learnt to navigate our way around the system. An unwieldy, sometimes broken system, but a system nonetheless, that had an air of familiarity and comfort about it.

We knew where to find people and services, and if we couldn’t find them, there was usually someone there to ask… It was a well-trodden pathway, which was as recognisable to professional as it was to families.

So, there was this system, this process, with strict protocols and procedures to be followed, and as a family, we were involved, informed, and as the years went by…. we became, “the experts”, and professionals turned to us for advice.

Unfortunately, this is not unusual, as many families will know.

Ok, so we’ve reached 18 years and 364 days, an unexpected achievement in itself admittedly, but one which shouldn’t have come as a huge surprise to adult services, they’d had 18yrs and 364 days to get used to the idea, after all.

Day two, nineteen years old…

Yay, we had “TRANSITIONED” into adult services.

Not sure what happened. All I know is that overnight we lost almost everyone and everything that mattered to us. We no longer knew where to find people or services, and even if we managed to locate someone, they had no idea what to do with such a complicated young person with complex health needs and disabilities.

My nineteen-year-old now doesn’t fit anywhere.

District Nurses took the place of the Community Paediatric Nurses… except they don’t understand that your young person is still at school or college and will not be able to wait in all day to see them.

Feeds and associated equipment are now in the domain of the Nutritional Support Service… but they’ve never encountered a young person with such specific needs, a mind of their own, and a family that enables them to make their own choices.

Pads… relatively straightforward, once I’d let them know that yes, we would still be requiring products, and no, there has not been a miraculous acquisition of bowel and bladder control overnight. Sorry, but they are unable to provide wipes, gloves etc. and they should be provided by the agency that does the caring. That’ll be me then!

And hospitals… where to start! There has been no transition, no handover, because there is nowhere for us to go. So, we continue to access GOSH. Not ideal as the beds are too small! But, my nineteen-year-old cannot go onto an adult ward, cannot be left alone, and to do so would have unthinkable consequences.

I should probably mention that education is… OK for this academic year.

…and we still have a personal social care budget, and a very nice GP, and we access our Children’s Hospice… at least, for the remainder of this academic year.

I am no longer a Parent. I am an “Appointee”, for the purposes of the DWP. I am a Court appointed Deputy for all matters relating to Health, Welfare and Finance. I am a point of contact, a dot on a circle of support, an email address, and a telephone number.

You wake up one morning with a child of 18 years and 364 days, and it’s business as usual.

You wake up one morning with an adult of 19 years, and everything has changed. But nobody told you.

That was two years ago, so what happened as we transitioned?

Four of my daughter’s five ‘ologies discharged her from their service without making any arrangement for future care. They also forgot to mention this to us, so when we began asking questions such as, “when will the next appointment be”, we discovered that not only would there be no more paediatric appointments, but no referrals had been made to adult health services either.

  • We had to involve PaLS, and then the Chief Executive, in our quest for transition
  • We had to manage very complex health needs without adequate support.
  • 24hr direct access to paediatric consultants had been replaced with an impersonal hospital switchboard.

Day Three, twenty-two years and 10 days old…

  • Still waiting for a transition plan
  • Still waiting for ‘ology referrals
  • Still accessing the Children’s Hospice

As I’ve outlined, there is no one-size-fits-all experience for families experiencing transition from children to adult healthcare services. Different families experience different challenges, and others have a smooth journey.

The key is being prepared:

  • Start asking questions when your YP is fourteen
  • Ask who will be coordinating your YPs transition planning, and meet with them
  • Get hold of a copy of the transition planning tool used by your health services, or develop your own
  • DO NOT leave it until they are ready to be moved on!

 

Looking for information to help with healthcare and transition?

If you would like help with preparing for adulthood, and the changes it may mean to you and your family, the ESPaCC website has a wealth of resources here: https://www.eastsussexpacc.org/health-and-wellbeing.html  

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