Meopham mum forced to go private after struggling to get twins condition assessed on NHS

A mum of four says she is frustrated and angry at the lack of answers to concerns for her daughters’ health problems.

Sarah Johnson, from Meopham, has been paying out for private healthcare in a bid to diagnose and treat her daughters quickly, after being told she’d have to wait a year on the NHS.

The 40-year-old first noticed something was not quite right with her identical twin daughters, Astrid and Iris, in December.

“As they were approaching a year old, it is normal to have a development check,” she explained.

“I became aware that they weren’t developing in a way that was typical.

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“They weren’t sitting up particularly well – Iris had started to crawl, Astrid was really struggling – neither of them were walking.

“I also noticed that Astrid had a very distinctive squint, her eyes were looking in different directions and she would lift herself up and fall back down constantly.”

After attending the health visitor check, the mum was told the pair showed some “gross motor skills delay”.

The umbrella term is given to children who may not be rolling, sitting, crawling and walking as age-appropriate.

Sarah was sent to the GP to get a referral for a ophthalmologist regarding Astrid’s eyesight.

In January, she was sent a letter to say her daughter had been accepted and if she didn’t hear from them by May, then she should let them know.

By February, Sarah says the twins hadn’t made any improvement or progress in their movements.

“They weren’t standing up at all, or ‘furniture surfing’ like you would expect,” she said.

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“I waited until they were 18 months old, because that’s a pinnacle milestone.”

Contacting her local surgery, Meopham Medical Centre, the mum asked for the girls to be looked at again.

Sarah praised her GP, saying he was very good and had referred her to a community pediatrician within a day.

Community pediatrics is part of the Kent Community Health NHS Foundation Trust, and is based in Darent valley Hospital, Dartford.

Sarah said: “Astrid had been referred to and accepted by them in January.

“But when I called up they told me they couldn’t give me an appointment until at least February next year.

“I asked for a specific day or time, so that I would at least know when it is, and they couldn’t give me one.”

While some children can develop at later stages than others, the twins were premature and Sarah fears this could mean the delays is for an underlying health reason.

‘…when I called up they told me they couldn’t give me an appointment until at least February next year.’

As a result, Sarah has decided to go via private healthcare.

So far she has spent £900 and has started physiotherapy for Astrid and Iris, in the hopes that it will prevent an expensive operation some time in the future.

After receiving treatment for Astrid’s vision problem, Sarah is still very concerned about both girl’s physical development.

She says their condition has not been diagnosed by the right specialist.

“I’ve been told Astrid has severe hypermobility and hypertonia,” she explained.

“Her condition could just be hypermobility, but it could also be cerebral palsy or something underlying.

“All I know is that both their feet aren’t supposed to be in that position. I can’t tell by looking at her, the physio can’t either.

“I need to know whether I should just concentrate on on the physiotherapy or if there’s something else that needs to be done.

“I still don’t have any treatment plan from the NHS.”

It has now got to the stage where Sarah cannot carry on paying private for both of the girls.

She said: “It’s intolerable for them, because it affects their development and being able to engage and socialise with other children.

“I’m still having to carry two babies for longer periods of time, when they’re too heavy for that now.

“It’s frustrating,” she added. “If I could be told ‘look, they are just a little bit slow and will catch up and don’t need anything’ fine – but that’s not the case.

“I need to have that guidance on what is the best thing for my children.”

The mum is now in talks with both her local councilor and MP, as well as publicly documenting her progress on Twitter.

‘I really care about the NHS, but there are processes here that are not working.’

“But I shouldn’t have to do any of this,” she said. “I feel quite angry and frustrated.

“I know I am going to be seen as a pushy mum, but I don’t care.

“If I left my child’s needs for a year, you would be rightly concerned about me being neglectful.

“I really care about the NHS, but there are processes here that are not working.

“They know early intervention is key – so do the intervention. It’s a really fragmented system.

“I know I am not the only one. It makes me think how many other parents and children are struggling with this?”

A spokesperson for Kent Community Health NHS Foundation Trust, which provides community paediatrics services to children with developmental needs in west and north Kent, commented: “We know children are experiencing long waits for some assessments and recognise how challenging and frustrating this is for parents and carers.

“We have a very high number of referrals, which has led to long waiting times that we know are unacceptable.

“It is a national issue and we are working hard to improve this for the families we care for.”