Jake's story: falling through the gaps

People often come to us when they are experiencing difficulties in accessing complex care pathways and need some help to navigate them. We heard from the mum of a young man with autism. Jake’s* autism means he has extreme hypersensitivity to pain.
A preteen boy sits in front of a chess board

People often come to us when they are experiencing difficulties in accessing complex care pathways and need some help to navigate them.

We heard from the mum of a young man with autism. Jake’s* autism means he has extreme hypersensitivity to pain and was struggling to get vaccinated against COVID. His mum asked the GP and community paediatrician for help, and was told there wasn’t a local service that could help. Understandably, Jake’s mum felt her son had the right to be protected against diseases just like everyone else.

We spoke directly to the NHS children’s services commissioner who quickly put us in touch with the school’s immunisation team. They arranged a visit where Jake could get his COVID vaccination, any other vaccinations he needed and a full physical health check, including a dental check, under sedation. The support was there for Jake after all, but it had taken our help to unpick the problem and connect to the right team. Sadly, this happens all too often for people who need more complex care and support.

* Jake’s name has been changed to maintain confidentiality.

“I don’t expect service providers to know very much about autism and my son’s need because this is such variable and multi-faceted condition. But all too often we come up against, ‘ he doesn’t meet the criteria’, or ‘we don’t offer this as a service’, or we get bounced around from pillar to post. So it’s been totally refreshing to speak to someone who ‘gets it’ and is happy to work with us to give my son the kind of healthcare experience that most people take for granted. Thank you to the Immunisations Manager and Healthwatch for putting us in contact when all else failed.”
— Jake's mum.

What difference did this make?

We were able to use our knowledge of health services in Milton Keynes to facilitate Jake getting the personalised care he needed to protect himself against COVID - and have a full health check at the same time -in a way that met his needs.

We took Jake’s story to the Bedfordshire, Luton and Milton Keynes Integrated Care System Governing Body Board to highlight both what did and didn’t work well for Jake and his Mum. We emphasised to health leaders the need for health and care services to be tailored to individual needs. We also demonstrated the need  for professionals to be knowledgeable about the support that is out there for their patients.

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