Given the run around need some help and advice - GOSH APD

[nickminiink]

Hi I am trying to get my son (10 years old) referred to an audiologist for assessment so we can eventually get him referred to Great Ormond Street Hospital to their APD Department. I have an EP assessing him in 2 weeks and I have his latest speech and Language report all to help with his referral to GOSH. However what I thought would be the easiest part is turning into a nightmare. I went to my son's GP over 2 weeks ago to get a referral to an audiologist to perform the hearing test required as part of the referral process, to get told the Paed should do this referral, after 2 weeks of chasing down the paed to talk to me regarding this, I finally spoke to them today who said my GP should make the referral. I am sure you can imagine my reaction, after I calmed down the paed said she would look into this for me and she then asked "do you have an audiologist you want your son to see". I said "surely you should be advising me of that", jees I am fuming, then she said becuase we are in leicestershire my son wouldn't get a referral to GOSH as he is not from the same county and she can not do out of county referrals. I explained that GOSH is the only APD clinic in the UK so they have to do out of county referrals. I feel like I wasted weeks of my life chasing appointments to be told this and everyone giving me the run around.
Can anyone who has gone through this process please advise so I can go armed with more information as I have an appointment on the 24th May to discuss this and my application for statutory assessment.
Thank You.

Haven't been through the process but .... GOSH do take 'out of county' referrals, so your paed is talking twaddle. The reason she asked you about a preferred consultant would be because many parents do their own research prior to asking for such referrals, so she would have been acting upon experience rather than ignorance. The GP/paed referral issue is a matter of the arm not knowing what the elbow is doing iyswim. I've researched everyone that's seen my son and asked for 2 specific specialists in the past. If you think GOSH is the best place to help him, go back and insist on the referral. I would call GOSH's APD department and get their advice on how to navigate the referral - they may even know of someone or another hospital that may be nearer to you that has same services. Also find out who the consultants are and google them. Good luck

At APDUK we are aware of the costs of a referral to GOSH has been considered by Local Health officials to be too expensive, and not within their new budgetary guidelines.

The Guidelines from GOSH have always required a GP refferal which is standard practice.

The BSA APD Steering Group web page may help provide more information and professional contacts.

nickminlink - i had a similar issue with getting a referral to a different department at GOSH. It seems in our area that if your GP refers you to a paediatrician for your DC, then they are responsible for the ongoing course of treatment to get to the bottom of the reason that they were referred. So if you were referred for 'behavioural' issues, any further treatment/diagnostic course, out of professional courtesy, would need to go through the same paediatrician.

Our paed sent a letter to the audiologist (who DD had seen only 3-4 weeks before) and asked the audiologist to refer to GOSH for APD. I have no idea if that route actually works as haven't heard back yet from anyone about it, but on the plus side it hasn't been thrown back at me either.

Hi All

the problem with regard to APD assessments in the UK is due to in part to the recent official recognition of APD in the UK (2004) and the Medical Research Council (MRC) requiring new diagnostic tests based on Sound Frequency, as opposed to the langauge based tests available from the USA where they have known about APD since the late 1960s.

The MRC won government funding for its first 5 year APD research program in 2004, and this is when the Institute of Hearing Research (IHR) based at Nottingham University began their research regarding the new Universal APD diagnostic tests. All medical diagnostic tests have a specific set of assessment procedures to go through post development. The first post development process is the "ethics procedure" or initial clinical trials, this happened 2009 -2010, the final steps are more beuraucratic and as recognising the new diagnostic tests to be the official diagnostic test used in the UK for a UK recognised disability, which is where we are now.

Consultants at both GOSH and the neighbouring National Hospital for Neurology and Neurosurgery have been part of the MRC research program developing the new diagnostic tests.

According to the IHR 2004 APD pamphlet 10% of children have some degree of APD. And there are more issues which can cause APD in adults, which in the UK means that some 6 million people have some degree of APD. Two hospitals could not cope with that many referrals. Which is why APDUK has been lobbying for more assessment centres around the UK.

Another issue is that APD is a specialised diagnosis for audiologist to carry out, The audiologists need to be trained how to carry out the diagnostic tests, and how to interpret the results which requires some degree of training. APD assessments also require sound-proof booths in which to perform the diagnostic tests, and there are a number of tests in the APD battery of diagnostic tests, which may require the creation of more than one sound proof booth per assessment centre.

The public awareness of APD is increasing and as a result the demand for assessments is increasing, but at this point in time there are only two assessment centres, hopefully when new are officially approved there will be a great many more local assessment centres around the UK using recognised UK APD diagnostic tests.