Parent
Background
Tom Broekhuizen was 20 months old when he was diagnosed with pneumococcal meningitis in April 2006. As a result he was left profoundly deaf.
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Tom’s speech was just beginning to develop. Ossification of Tom’s inner ears had already started and his balance was affected. His consultant at the Nottingham Cochlear Implant Team and his local GP recommended that he should receive bi-lateral cochlear implants. His parents were devastated when their PCT only agreed to provide funding for one implant.
Rushcliffe PCT’s grounds for denying Tom a second implant were that they would rather concentrate funds so that everyone who needs an implant gets one rather than fewer getting two. This does not fit with their policy (which was still in draft form at the time of the appeal).
Rushcliffe PCT are part of Trent COM; a group of PCTs across Notts, Derbys and Lincs who share a commissioning policy with regard to CIs amongst other things. The policy contains a list of eligibility criteria for who should receive a CI and the PCTs are committed to providing implants to all that need them. Providing a second implant to one child does not take an implant away from another — or shouldn’t according to the policy.
Jason’s experience
Tom’s father, Jason, campaigned relentlessly to get a second cochlear implant for Tom and here gives his experience of applying for PCT funding.
Dealing with a child’s deafness is a considerable challenge for families whether it is evident from birth, occurs suddenly through illness (as happened to our son Tom) or develops gradually. There are a mass of emotions to deal with along with the practicalities of getting appropriate information and support. Discovering that the level of treatment you get is not guaranteed and depends on where you live can add even more strain.
Our son lost his hearing following meningitis. The consultant quickly arranged a hearing test and, following the test results, a referral was made to our local Cochlear Implant Programme. At the time, where we lived seemed like a boon; five minutes from Nottingham’s Queen’s Medical Centre, one of the pioneers of paediatric cochlear implants and one of only 24 adult and paediatric cochlear implant centres in the UK.
So far, so good. During our first meeting with the implant team the funding process was explained; our local Primary Care Trust (PCT) was responsible for the cost of the operation and ongoing care (device tuning, upgrades and so on). The Implant Programme would make the application on our behalf and would ask for the money to carry out a simultaneous bilateral implant. We went away hoping for many things; our son to keep recovering from his illness, an operation very soon and a favourable response from the PCT. Not all our prayers were answered.
A mere five weeks after his first hearing assessment, we found out that Tom was booked in for surgery on Thursday 15th June. This fast-tracking has become common practice with post-meningitic cases due to the ossification of the cochlea that often follows the disease.
Our elation about the rapid progress was tempered by the news that the PCT would only pay for one implant, following a policy that they shared as part of a larger commissioning consortium (a group of PCTs who ‘share the risk’ of rare, expensive procedures across their area). We had been warned that this may be the case; responses from PCTs are in no way consistent in this regard. Indeed, only days before we got this news, my wife met a family with a son of a similar age who caught meningitis at around the same time and who had had bilateral implantation approved a few weeks earlier.
A second implant
After Tom’s operation we continued to press the PCT for the second implant. All funding policies have to contain an ‘exceptional circumstance’ clause and we began to build what we felt was a strong case. To have an appeal against a decision heard one has to have the support of a clinician; this was provided by Tom’s consultant surgeon and also by our GP. The appeal date was set for the 1st August and we were allotted half an hour to make our case or make a written submission. We decided to go and meet the appeal panel face-to-face.
We thought we had covered all the bases; implanting post-meningitic children bilaterally is becoming increasingly routine across the country, Tom being an excellent candidate for the surgery in terms of expected outcome and we even tried to illustrate the cost benefits in terms of savings across the rest of his life. All to no avail. The questions that followed our presentation clearly demonstrated where the appeal panel stood: the issue was essentially one of cost. We were no clearer on what ‘exceptional circumstance’, if any, they would consider.
After the appeal
The day after our appeal, a story appeared in The Times describing how a Dorset PCT’s decision to turn down bilateral implants for a little boy had been reversed following pressure from the paper.
We received our bad news a few hours later; the PCT would not be funding a second operation. Although we were expecting this, it was still a crushing blow. At this point we involved the media but the PCT just issued statements when we were interviewed. As far as they were concerned the discussion was over, but we weren’t going to let Tom’s treatment be halted part way through.
We are currently pursuing the next stage of the appeal process; a review by the Healthcare Commission. The initial findings are overdue and as a full investigation might take up to six months, we knew that it was too much of a gamble to delay Tom’s second implant based on an uncertain outcome.
Tom had his second implant, paid for privately, on the 23rd September 2006 and he is recovering well. It is an enormous relief that we’ve got to this point and we can now focus on his therapy while continuing to pursue the avenues of appeal open to us. We are now in the complex position of having one ear cared for by the NHS and the other, our financial responsibility. This wouldn’t be the case if we lived in many parts of the country and that drives us to keep fighting our son’s case.”
You can read more about Tom’s progress on a blog which Jason has set up.
