NHS Treatment for my son

Jordan579

Hi everyone, I need some advice on what I can do.. sorry for the long story but it’s hard to shorten it lol

I’ve got 3 boys the youngest is 3 months old. He was born with bilateral talipes (clubfoot) which was picked up on the 20 week scan so we knew about it and discussed treatment with doctors at our local hospital before the birth, which basically consisted of a weekly set of casts for 4-6 weeks and then an operation to cut his achilles tendon and then boots and bar until he’s 5. 

The first appointment was when he was about a week old and they scored his feet as most severe and very stiff tendons. He was cast and we went back the next week, took off the old casts and he got a new set in a slightly different position. Everything seemed to be going fine until around the 6th week when one of the casts slipped and had to be cut off straightaway to avoid pressure sores. The cast is supposed to be reapplied straightaway but because it was a Friday there wasn’t anyone available until the Tuesday. His foot had turned back in to pretty much the original position by the Sunday. 

This is when the problems began.. the next 2 weeks the casts slip and again because there’s literally no one trained in the treatment we have to wait nearly a week each time. By this point his feet have returned to ‘normal’ and we’ve wasted 8 weeks going backwards and forwards to the hospital 45 mins away. 

We were seeing 2 different doctors at the local hospital because they take it in turns to come from different hospitals to provide the treatment once a week. The main doctor said to us you’re better off travelling 2 hours to her hospital so she could be the only one treating him and it would work much better that way. We agreed and we started travelling the 2 hours every week.

The first week we travel there is when we thought they don’t actually know what they’re doing. His legs were too swollen to cast but the doctor was going to anyway because “I didn’t want you to come all this way for nothing” but luckily the 2 physios stopped her. So we wait another week and by some miracle the doctor who co-created the treatment 20ish years ago just happened to be at the hospital that day for training. She examined him and said to our doctor you only need 3 weeks tops to cast and then operate.. which is what should have happened in the first place. But if it isn’t sorted in 3 weeks we need to travel into central London to see her colleague.

My wife went to the hospital today for his 2nd cast and his legs were too swollen again so they can’t cast until Monday. The doctor is now saying we need to travel the 4 hours round trip every other day so they can cast more frequently to stop slipping. That’s fine but I honestly don’t know how we’re going to afford all the travel costs! It’s costing £50 each time we go to this hospital already. But if we end up having to go into London which there’s a very strong possibility I’m going to have those days off work to travel the nearly 4 hours into London. 

I’ve looked and asked the hospital and the NHS do cover travel costs for repeat treatments… but only if you claim any benefit. Literally any benefit and I could claim back all my travel costs, but because we’re £100 over the threshold we’re entitled to nothing. I’m not a high earner, barely above low income and I’m going to be losing close to £300  every day he needs treatment which at best is once a week for a few weeks.

If he doesn’t get the treatment he won’t be able to walk, simple as that really. I just can’t believe there’s nothing in place for these sort of situations.

I’m stuck between getting the right care for him and being able to afford food. 

What would people suggest I do next?

Many thanks!

Savvy_Sue

Either of you in a union, or members of a professional body? Ask if there's support there.

Or is there a talipes support group? 

Savvy_Sue

Savvy_Sue said:

Either of you in a union, or members of a professional body? Ask if there's support there.

Or is there a talipes support group? 

And I think if you're paying for parking, concessions ought to be available for that.

Jordan579

Savvy_Sue said:

Either of you in a union, or members of a professional body? Ask if there's support there.

Or is there a talipes support group? 

Neither of us are in a union, there’s support groups but they’re mainly for education. 

We had to beg to get the £4 parking validated today lol 

shining_this_way

Have you looked into the NHS Low Income Scheme? I don't have personal experience but it sounds like it's for cases like yours. It's for people who don't claim any benefits but whose expenses exceed their income. I assume the travel expenses would count for this. From the website: "you can get help with health costs even if your income is too high for a means-tested benefit."

I can't post a link but Google NHS Low Income Scheme.

theoretica

Can you claim DLA for your son?

If you are losing income on treatment days has this brought your income down to a level you are eligible for benefits?  You have probably done this calculation but worth confirming.

silvercar

Child benefit? Would that count.

sheramber

https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/

You can claim help with travel costs if you or your partner (including civil partner) receive any of the following benefits:

• Income Support
• income-based Jobseeker's Allowance
• income-related Employment and Support Allowance
• Working Tax Credit (WTC) with Child Tax Credit (CTC)
• WTC with a disability element or a severe disability element
• CTC but you're not eligible for WTC
• Pension Credit Guarantee Credit
• you receive Universal Credit and meet the criteria

You can also claim for help with travel costs if:

• you're named on, or entitled to, an NHS tax credit exemption certificate (if you do not have a certificate, you can show your award notice) – you qualify if you get child tax credits, working tax credits with a disability element (or both), and have income for tax credit purposes of £15,276 or less
• you have a low income and are named on certificate HC2 (full help) or HC3 (limited help) – to apply for this certificate, you should complete the HC1 form: claim for help with health costs (PDF, 218kb), which is available from your local hospital, Jobcentre Plus offices or the NHS print contract order line on 0300 123 0849

Patients who are not in receipt of a qualifying benefit, but are on a low income, and whose savings are £16,000 or less (or £23,250 or less if in a care home, or £24,000 or less if residents in Wales) may be eligible for assistance with their NHS travel expenses.

Find out more about the NHS Low Income Scheme.

sheramber

Have you enquired about any disability benefit?

Jordan579

Thanks everyone for your replies. We’ve applied for DLA but speaking to our doctor and a few other people they rarely/never give it to children under 2 so we’re not expecting anything from that.

The Low income scheme is probably the last thing we can apply for, they don’t specify what a low income is so I’m guessing it’s done on a case by case basis. I’ve sent my payslips and stuff off though so fingers crossed!

sammyjammy

there might be charities that can help, neither of you civil servants?