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Private developmental paediatrician in the north west

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pigeon January 11, 2017 10:10
Hi Could anybody recommend a good private developmental paediatrician who could assess for ADHD in the north west of England please? Thanks pigeon
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Flosskirk January 11, 2017 14:35
I'm sorry I don't know anyone, but did want to caution against seeing a private paediatrician. Since children's medical care in the NHS is pretty good, you don't find many paediatricians operating privately on the side as you get with other areas of medicine and so you may have to see someone who only practices privately. You would need to check carefully that he/she is sufficiently experienced in a child from a background of trauma / abuse / complex needs - not saying that wealthy families who can afford to see private specialists don't have that background too, but it's different and often you find that these specialists are largely seeing a certain type of client and it might not be similar to your situation. Personally I would look for a full neuro developmental assessment to look for everything. Also try to get ed psych and speech and language and OT. The thing is, sensory problems can look a lot like ADHD and so you kind of need someone who can look at the OT/sensory side of things. Often our kids score on everything going. My daughter has 'passed' the questionnaire for everything she has ever been considered for and part of the problem is that we have seen people in their own silos, so the psychiatrist assessed for adhd but for nothing else. Finding someone is easier said than done of course......
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pigeon January 11, 2017 16:39
hi flosskirk Thank you so much for your reply. The problem is looking into a private assessment is an act of desperation! definately going to be paid for on the credit card, I simply cannot go down anymore 'care pathways' only to find that despite the excellent clinical staff, the systems within the NHS which are meant to help us access timely care are poor, leading to notes going missing, referrals disappearing and highly confidential information ending up god knows where? In a nutshell AD has OT in place (having been discharged from sensory integration therapy due to her complexity. When I challenged this decision it was agreed that money could be applied for via the CCG for a number of sensory attachment therapy sessions, which thankfully we have now got) This decision was significantly delayed by the CCG losing my daughters information and the application for funding letter. I found out yesterday that the referral made to the community paediatricians (from our lovely hospital Paed) has also been lost and was told that AD would go to the bottom of the waiting list despite us thinking we were 'waiting' for the last 6 months? The aim of this referral has been to assess for ADHD and dyspraxia. I appreciate the presentation of trauma and attachment can mirror that of ADHD but there are some aspects of her behaviour etc which have a different quality to them and I guess it is possible to have both (the hospital paed agrees with this)? I think I'm just trying to ensure that the assessments are comprehensive and I'm trying to rule in and out other issues which could possibly by helped by other treatments? It may be that it is all entirely trauma/attachment related. It is already the case that her life is significantly effected by problems which are multilayered, I dont want to find out further down the line that these two areas were overlooked and by addressing them earlier some of her difficulties could have been ameliorated? I would definately want a developmental Paediatrician who understands the influence of trauma and the similarities in presentation. I would be willing to travel if that clinician exists in another part of the country? Thank you once again sorry for the rant! pigeonx
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Donatella January 11, 2017 16:50
Could there be fasd in the mix as well?
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pigeon January 11, 2017 17:10
Hi Donatella Possibly? There was a brain injury which was always (understandably) considered as another possible cause of ADs problems but an MRI scan this year has ruled that out? Px
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Donatella January 11, 2017 17:24
I guess it's something that's fresh in my mind atm. My daughter is 11 and was diagnosed ASD at 7. It partly fits her but we've always had a nagging suspicion that it doesn't explain everything. She was assessed for ADHD but didn't fit that and she certainly doesn't look like my son who has been dx ADHD. But still .... Pasw was the first to mention PDA for her and she does fit a lot of it. She's very demand avoidant and can be quite tricky to parent. However pasw also suggested fasd even though there's no written evidence. We did finally see a very experienced paed and she said that even without written evidence, her spikey presentation and mix of symptoms could be indicative of fasd. She runs an fasd clinic and is medical advisor to fostering and adoption panel! We're starting the process with microarray genetic screening to rule chromosomal deletions etc out before ruling fasd in. A bit of a waiting game. In the meantime, a friend sent me the following information which is a pretty good fit for her. https://www.gov.mb.ca/healthychild/fasd/fasd_hiddendisability.pdf Worth a read?
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safia January 11, 2017 18:18
Just to say the psychiatrist we saw specialises in adult ADHD (as AD was 19 and therefore "adult") but works full time in the NHS and also is knowledgeable about trauma and anything else we have discussed - no good to you unfortunately - but I'm sure if you research any recommendations you will find the right person. Although we saw him in Wimpole Street most of the people he sees I think are there because they are desperate not because they are wealthy and the area his NHS hospital serves covers multiple disadvantages. I have found him to be very insightful and understanding and therefore do not want to take pot luck with the local services who were not helpful unfortunately.
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pigeon January 11, 2017 18:27
Hi safia I've sent you a PM Thanks
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pluto January 12, 2017 11:29
Why only look at the north west? You can go anywhere as you pay for it, the travel is only ones. I traveled by airplane to get the expert I trusted to assess my child.
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silver birch January 12, 2017 20:57
If you google private ADHD assessment you will find quite a few clinics willing to do an assessment in the north west of England, weather they are any good I have no idea. It will not be cheap if they do a proper assessment and if medication is advised you will need to pay for the full cost of the medication and the ongoing monitoring needed. My son has an ADHD diagnosis made by a NHS consultant psychiatrist in the northwest. My son was with his birth mum until he was 2. His psychiatrist said it was impossible to say for definite if his problems were due to developmental trauma or ADHD, but what we do know is that ADHD medication helps him function.
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pigeon January 13, 2017 00:24
Hi all I've done some investigating and ive come across a private multidisciplinary assessment centre for ADHD and other neuro related issues in oxford. It feels like the right option for us, hopefully we will get some answers? I read somewhere silver birch that if it's ADHD the meds will help if it isn't the meds will have no impact? I don't know if that's true or not but that's what I'm holding in mind. Thank you for your all your advice and encouragement it's been a big help over these last few days. Pigeonx
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Flosskirk January 14, 2017 14:09
Hi, I hear how angry you are - and you are right to be angry - and yet still I think it would be a good idea to stay within the system. But if you do want a private assessment I would say to get someone as multi-disciplinary as possible where you are confident that they will not simply diagnose their area of speciality. Check what they will look for up front so you know. Most traumatised children will tick lots of boxes and I think that it is unlikely that your son will either have adhd (stand alone condition) or won't have adhd (so is fine). He is likely to have a spiky, complex profile, with strengths in some areas and weaknesses in others. He might not be diagnosed as having adhd but the meds might still help - it is much more complicated with adopted children. For example, my elder daughter has fine motor skills problems but the rest of her upper limbs are fine. The OT told me that this is very unusual, that usually they would expect to see problems in the arms too. She was constricted as a child - she was mostly strapped in a push chair and had no toys. So she never used her fingers much and so the neural pathways didn't develop. The OT had never seen this before. So I would say that you should find someone who understands complex needs as a priority and a lot of the private clinics won't, as they are largely used by concerned parents whose children don't meet NHS criteria (or as safia says, are so concerned they don't want to wait). This is not to denigrate this group of people, but it means that the people working in these clinics may not be particularly experienced in early trauma (and I say this as someone who has used private services in the past). Basically, just be careful, or you could end up swapping the chaos of the NHS for a lack of understanding of your situation in the private sector. Neither good! BTW I wondered if you have come across BIBIC (Somerset but worth a look)
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silver birch January 14, 2017 16:29
I agree with Flosskirk , even if you had private medical insurance it probably would not be the best option going down the private route. Yes private health care tends to be a bit more organized than the NHS, but I know from personal experience they can still loose things, after all they are only human. More importantly they are not that good at dealing with complex case's. If you do go down the private route personally I think you would be better looking for somewhere closer to home as your AD will need to make several visits to be properly assessed and regular ongoing monitoring if medication is prescribed. At least your transport cost will be less. If I was to pay for my son's ADHD medication privately it would cost about £450 per year for his tables plus whatever the prescriber chose to charge to issue the prescription and monitor him.
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safia January 16, 2017 11:09
I just wanted to add that going for a private assessment does not necessarily commit you to using the private system long term - but once you have the report you can then use it to access the services you need - which may include medication (if recommended) and you would then get this through the NHS. The person you see will write to your GP and could also write directly to the paediatrician involved (not sure if you have one yet or are on the waiting list) But your GP can then be pro-active at chasing up the right services too.Since you are already in the pipeline for NHS services this would then be something you could use to speed up / heads things in the right direction. Good luck with your assessments!
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silver birch January 16, 2017 12:51
GPs in my area will not prescribe medication for ADHD their argument is they are not experienced in the on going monitoring. I know people around here who have gone down the private route to get an ADHD diagnosis only to find they need to be reassessed if they want medication on the NHS.
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safia January 16, 2017 13:02
I wasn't thinking of GPs - but paediatricians as the OP was seeking assessments through them - our GP will not fund them either - but will write and fund privately recommended prescriptions of other medications (eg for depression) as long as its on their list. A psychiatrist or paediatrician would have to oversee the ongoing assessment if medication is involved for ADHD as would be the case whether or not the assessment was done privately or on the NHS - but it would not necessarily be prescribed at this stage - a full assessment as suggested could be used as evidence for referrals within the NHS or for support in school.
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pigeon January 18, 2017 13:47
Hi All Sorry for the late reply, problems responding to you via my i phone so had to wait until I could get to a computer. I've chosen a centre which understands neuro diversity and also where the clinicians are working within a city NHS hospital and seeing the kind of complexity that my daughter undoubtedly presents with including trauma. I've done a lot more searching around since the initial post and I can see that a diagnosis could be arrived at for all the wrong reasons, so I've been rigorous in locating a service that has the breadth of knowledge and is multidisciplinary. The paediatrician who referred us for assessment within the NHS is very understanding of my situation and the referral to the community paeds is still going ahead. Ultimately if AD receives a diagnosis and the NHS wont prescribe I will have to fund it, to be honest if there is a positive outcome to medication combined with the OT AD is due to receive I will have to find a way. AD has support in school now with no formal diagnosis so that is less of an issue thank goodness, its taken a long time but I know that is a common experience for many parents and we are very grateful for the support AD is offered in school, they have been fantastic. Thank you again for all your thoughts and the discussion its generated, its a massive help that I can only get from these boards. best wishes to you and yours pigeonx
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Flosskirk January 19, 2017 09:59
Sounds good pigeon. I do think it's worth keeping your NHS options open.
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pigeon January 19, 2017 11:22
Thank you I will do px
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Super Spring March 22, 2017 18:09
I cannot suggest a local paediatrician but we went to one in London, after much research I found someone who is at the top of her field and also runs an NHS service specialising in ADHD and autism. I'm happy to send you the details in a PM if you like. We also got fed up of waiting and continuing assessment and not much action. Since getting our sons diagnosis, everything has kicked in and he is now getting the support he needs, its the best decision we could have made and well worth the money. Our appointment was tailored as we were travelling a long distance and we were able to keep in touch by email and phone afterwards. We felt that we got first class service and continued advice. She even emails now occasionally to see how he is getting on and makes suggestions. Also to add to this, once we got the diagnosis, our GP then referred him to a local paediatrician, it hasn't affected the NHS options at all merely kickstarted everything and given us a headstart. We get his medication on the NHS. We have friends who have children still being assessed after 5 years, we just couldn't allow money or distance to be the reason we allowed things to drag on that long.
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