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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to start a Go Fund Me page for a private diagnosis for DS?

286 replies

squirrelnut · 06/09/2020 10:13

I’m feeling really low at the moment so possibly not the best time to post in AIBU but I need honest opinions!

I want to start a go fund me page to raise money for my DS (5) to pay for a private ASD assessment. It’s £2000 which is more than we could ever afford.

I’ve been battling with the NHS since he was 9 months old. He has a very complex history of trauma whilst I was carrying him and I also have mental health problems so the stick tends to get pointed at me and it’s either poor parenting or attachment issues (for which zero support or understanding is available). I have 3 older children who have no similar issues.

DS currently has no proper diagnosis other than development delay which is preventing us from accessing the right support for him. I don’t think he fits neatly in one box and so we really need professional help and someone who takes the time to conduct a thorough assessment of his needs.

CAMHS have been terrible and for years refused the referral and the one time they did accept, I had a meeting with them (without DS) and they promptly discharged him!

So tell me AIBU to start a go fund me page as it feels an uncomfortable thing to do.

OP posts:
RattleOfBars · 06/09/2020 12:44

I’m sorry you’re struggling. And it’s a pain the waiting list is so long. But he may not have ASD or end up classed as borderline, so extra support after the assessment isn’t guaranteed.

Personally I wouldn’t do a Go Fund Me, because lots of children have suspected ASD and are on NHS waiting lists. Asking strangers to fund a private assessment is like jumping the queue as well as begging for money.

It’s different when people are trying to raise money for a child’s treatment or surgery for a life threatening condition eg cancer. Especially when the treatment isn’t available in this country.
But your son’s condition hasn’t been diagnosed yet, isn’t life threatening even if he has it, and you’re already on an NHS waiting list for assessment.

Can you get help from the school or a paediatric OT while you wait?

hoodathunkit · 06/09/2020 12:45

there are a number of extremely concerning files from Beacon House available to download from their "resource" page here (via the archive for safety)

<a class="break-all" href="https://web.archive.org/web/20200617225627/beaconhouse.org.uk/resources/" rel="nofollow" target="_blank">web.archive.org/web/20200617225627/beaconhouse.org.uk/resources/

The link that the OP gave that returned a 404 error is avaible via the resources page in my above link or readers can view it here

<a class="break-all" href="https://web.archive.org/web/20200906113457/beaconhouse.org.uk/wp-content/uploads/2019/09/DT-Van-Der-Kolk.jpg" rel="nofollow" target="_blank">web.archive.org/web/20200906113457/beaconhouse.org.uk/wp-content/uploads/2019/09/DT-Van-Der-Kolk.jpg

It was written by the extremely controversial "trauma expert" bessel van der Kolk.

This document is extremely concerning

<a class="break-all" href="https://web.archive.org/web/20200906113218/beaconhouse.org.uk/wp-content/uploads/2020/02/Dissociation-in-Children-Teens-Resource_compressed.pdf" rel="nofollow" target="_blank">web.archive.org/web/20200906113218/beaconhouse.org.uk/wp-content/uploads/2020/02/Dissociation-in-Children-Teens-Resource_compressed.pdf

therapies on offer at Beacon House include

Art Psychotherapy
Comprehensive Resource Model
Dramatherapy
Eye Movement Desensitisation and Reprocessing
Integrative Psychotherapy
Internal Family Systems Therapy
Schema Therapy
Sensorimotor Psychotherapy

I am extremely concerned about some of these therapies, especially Internal Family Systems which has a long history involving the abuse of vulnerable patients

OP, I have not had time to research Beacon House properly but would like to thank you for bringing it to my attention. This is exactly the kind of organisation that I research and about which I have many concerns.

I would strongly recommend that you get a 2nd opinion from a more conventional, reputable organisation

I appreciate that you may feel that you have made a connection with the people at Beacon House but really your money would be better spent elsewhere

Petitmum · 06/09/2020 12:45

Sadly in my experience diagnosis does not equal support and many local authorities do not recognise a private diagnosis.
Do school support you, will they refer to the ASD pathway?

DopamineHits · 06/09/2020 12:49

Set up the Go Fund Me - why not? Yes, you will get jealous types here saying you should sell all your organs first, but you have people on that site raising money for plastic surgery and receiving donations. This is much more worthwhile. Look into the loan, but set up the GFM too. And best of luck.

CatkinToadflax · 06/09/2020 12:51

@MillyMollyFarmer

squirrelnut just so you know, a lot of schools etc do not accept a diagnosis if it’s not from a psychiatrist. That place has none from what I can see, just loads of different ‘therapists’. I would look elsewhere personally.
I agree with the comment above. It looks like a lovely place but I’m not sure it’s even possible to diagnose ASD unless the assessment is undertaken by a paediatrician. In my DS’s case it was extremely obvious that he had ASD, but even the very good private ed psych said that he couldn’t make the formal diagnosis, a paediatrician would have to. The therapy centre you’ve linked to looks amazing for autism support and therapy but I don’t think I’d expect to receive a firm diagnosis there.

We were pretty fortunate that we only paid £300 for DS1’s ASD diagnosis. We were able to see an NHS paediatrician in his private clinic (to be fair, this was following an NHS assessment by an ASD specialist nurse) and he even wrote the diagnosis on joint NHS/private clinic notepaper. OP can you look into going down this route? You’d be far more likely to get an unignorable (if this is a word) diagnosis from a paediatrician than a therapist, I feel.

My final musing is that in our area CAMHS doesn’t treat anyone with autism at all. We are supposed to go to “autism services” instead, which doesn’t actually exist, but hey ho....

Standrewsschool · 06/09/2020 12:53

You can set one up, but that doesn’t guarantee people will donate. Normally you have to publicise these sites widely before people will donate. My son, then a teen, did a charity half marathon run a few years ago and set up a modest target. Loads of people said they would donate, we promoted his just giving link on Facebook etc, but only a few actually did.

JinglingHellsBells · 06/09/2020 12:57

@MillyMollyFarmer Okay I've looked at OWL and find it very confusing as a site.

The staff listed are mainly speech and language therapists. They are all over the UK, not on one site so I assume they work as freelancers with some referrals from OWL.

There are no educational psychs listed (just a clinical psychologist.)

I do not think from my own professional experience that this is a place where anyone should spend £2K. The reference to the NICE tag is quite vague- which part of what they offer is endorsed by NICE- maybe just 1:1 speech therapy. It's not clear. They cover themselves by saying not all EA will accept a diagnosis from them.

@squirrelnut The Beacon you linked to has been at the centre of controversy for many years. I was in education (special needs) for many years and remember it being flagged up then as not all it seemed. It is most definitely not mainstream and certainly not regulated.

Your son has had quite a number of assessments but none I can see from an educational or child psychologist. The British Psychological Society (BPS) is the gold standard for finding someone and you can search their website under location and specialities. I'd start with that and it's a lot less than £2K.

I have read literally dozens of reports from ed psychs over many years. IMO the ones done by the education authority are often very limited and, as resources are limited for remedial intervention, they are almost driven to downplay any issues- this can be done by limiting the type and number of assessment tests.

Ultimately, whatever label your son would have, is not going to help him unless there is support coming from school. Your options are a special school, or more support in school. That's the bottom line, sadly.

5amisnotmorning · 06/09/2020 12:59

If you were my friend I would donate. Though what have we come to that this is the only way you can access support. Good luck. X

AGoatAteIt · 06/09/2020 13:02

It might be different depending on where you live within the UK but about 5 years ago when my son was waiting for a diagnosis the paediatrician told us that even if we got our son diagnosed privately it doesn’t mean it would be recognised by the NHS or the LEA. This was when my ex enquired if it was much quicker to go private.

Not saying it to take the wind out of your sails but I’d hate to think that anyone would spend so much money and it turn out to be for nothing basically xxxxxx

MillyMollyFarmer · 06/09/2020 13:02

I do not think from my own professional experience that this is a place where anyone should spend £2K I agree -Jingle that’s what I said above about this place. My earlier comment was a general and not about this place she since linked to. This isn’t where I would of chosen to go myself. We had a psychiatrist

AGoatAteIt · 06/09/2020 13:03

Shit sorry about the kisses Blush I don’t even know why I did that 🙈

Everysinglebloodytime · 06/09/2020 13:03

As I think many others have said, you can do what you want but I wouldn't contribute unless it was a close family member.

Something to think about though... What would you get from the diagnosis? What would he get?

Having waited for seven years for referral (because of complex presentation and query over trauma impact - son is adopted) and a further two and a half on the waiting list. He has received precisely no extra help whatsoever. He was in special school already, but there is literally nothing for kids like him in our area. Any improvement has been caused by us understanding him better and helping him to understand himself.

Beautiful3 · 06/09/2020 13:04

Try it. Even if you only get £50 towards this, it's still good. No harm in trying.

JinglingHellsBells · 06/09/2020 13:06

@squirrelnut Just to repeat- there are no paediatricians working at OWL- only clinical psychs with a very basic degree in psychology. They don't appear to be registered the the BPS (but you could check.)

IME schools will only accept a diagnosis of ASD etc by a paediatician

JinglingHellsBells · 06/09/2020 13:08

You need to speak to the school again.
Some schools will not even accept a diagnosis of dyslexia if done by an educational psychologist because they want it done by 'county'.

MillyMollyFarmer · 06/09/2020 13:10

schools will only accept a diagnosis of ASD etc by a paediatician a psychiatrist we were told.

hiredandsqueak · 06/09/2020 13:11

OP if you do decide to fund a private assessment and you are in the Midlands then I would suggest looking at the Elizabeth Newson Centre My son attended the attached school and the professionals making assessments provided therapies in school and were all really helpful.
Not sure that a diagnosis will bring you the support you need tbh and sometimes schools, LA's don't recognise private assessments either.
It sounds like your EHCP isn't working if the school aren't providing what is written in it or if it isn't written in such a way that makes it legally enforceable and if your child isn't getting regular SALT and OT through the EHCP and your social care needs haven't been considered. So contact IPSEA and/or SOSSEN and get their help to alter that. IME if the EHCP is working and the placement is right then home life becomes a lot easier.

mumofthreewhatsfortea · 06/09/2020 13:12

We just went to the doctors and asked for a referral to the paediatrician which took a few months to get an appointment but then my son was assessed .

I don't really understand why the doctors can't do this for you ?

Witchend · 06/09/2020 13:13

I wouldn't, for a few reasons.

This biggest is I have a number of friends who that sort of money would make important improvements in their lives, so why would I give to one rather than another? I'd be a bit worried it could open a floodgate and I'd end up being constantly asked and feeling "Well I gave to OP, it's only fair I give to them."

The second one is that private medicine does vary, from ones that will give you what parent wants, through ones that will keep leading you on to "you now need this next equipment/diagnoses/assistance", through to the excellent ones.
Unless I'd had first hand knowledge I don't know which one you've chosen, because the former two are totally plausible at a superficial level-they have to be to get the money in.
Throw in the money making scheme and I'd also be worried having donated once, I was going to find it was always "just need another couple of grand, and then we'll be fine."

Also in my experience of people I have known well, and certainly not saying this is you, OP, most of the people who have sought a private diagnoses is because they disagree with the NHS one. Some of them may have been right to disagree, but I know for certain some of them weren't.

Think, OP, before doing it. Think who might you reasonably guess who might donate. Your parents? Siblings? Friends? How many might donate? I think I might get 10 people. That's £200 each. I don't think I could expect any except my parents to donate anything close to that. I think I'd be lucky to get £500 in total, probably closer to £200-just giving takes some of that as commission too. Is that worth it?

So what would make me donate:
You need to say exactly where it's going-I don't want to donate to "support medically" and find it actually went on "a new bathroom because he didn't like the colour" (genuine case I read once, child in question was less than 18 months old).
You also need to say why it is needed over the NHS. DD is missing her hand. I've seen a number of appeals for prosthetics, often exactly what the NHS offers, and, what's more, for upper limb prosthetics very few children choose to wear them beyond the first couple of days once the novelty has worn off. I suspect a lot of the time they get their first prosthetic funded privately, do more publicity, then quietly sidle off with the spare money and use the NHS/don't get another. That could be me being cynical.
I'd also want to know where the money will go if you decide not to go ahead with it (or in the unlikely event of getting too much). Best thing is to refund or a charity. If you can't find a relevant one you like, try a local one that people will know about.
Don't hassle people. Yes, make people aware. But no shaming/naming on social media. And don't post it three times a week.
And don't go for too much of a sob story. I'd rather it was factual. That may be a personal dislike, but a sob story doesn't have to go too far in for it to start sounding like you're playing the crowds, and becomes unbelievable.

But even with above, I'd only donate to a close friend. I think there's probably about 4 people other than family where I would even stop and look further than scrolling past. They're all people that wouldn't normally ask for money, would have investigated thoroughly, and would give you the moon if you asked for it.

Tenner · 06/09/2020 13:15

had a look at the website. Not a single paediatrician is part of their team. I highly doubt anyone would recognise the diagnosis in that case .

I have friends who had a private diagnosis accepted but they were done by recognised experts who work also for the NHS and did some private work alongside.

If you want to have him assessed, find a qualified paediatrician who does also NHS work in this area. I wouldn't touch Beacon House in that case.

Waveysnail · 06/09/2020 13:18

Diagnosis isnt a magic fix. You would be suprised how many people on the sen boards get diagnosis then totally shocked that there is zero follow up or extra support. Other issue you may come across is that some nhs trusts do not recognise a private diagnosis, same with lea

Didntgetadiagnosis · 06/09/2020 13:19

OP,
I've name changed for this.

But we went down the private diagnosis report about 18 months ago for our ds who was having a very difficult time school wise. There was a lot more to it than what I want to put on a public forum but essentially his school told us he was autistic.
We paid for it using a bonus from DH's work which should have been the family holiday that year. All in all including travel e.t.c it cost us in the region of 2k.
If you are going down the private dx route then you need to get the school on side first as they will need to fill in a school questionnaire as part of the process. Also, you need to be aware that some local authorities won't accept a private dx The local authorities that do insist that any private dx is done to the same standards as NHS, I.e. a multidisciplinary dx. And if you're going for a PDA diagnosis of any sorts then it's very contentious. Those that are in the know and are dx'ing it privately tend to call it 'ASD with a demand avoidant profile' or similar

DS didnt get diagnosed with ASD at his private assessment. This isn't unusual as it's harder to diagnose ASD in young children. Instead we were given a dx of global developmental delay with sensory processing disorder and receptive/expressive language delay. We also got a 60ish page report with it was well, which IMO was well worth the 2k we paid. Its been instrumental in getting him support, getting schools to listen to us, applying for his DLA (HRC and HRM under SMI rules) and was also used as part of his ECHP. Pre report he was just labelled as violent, defiant and immature. Post report, people actually listened to us.

We are now going down the NHS dx route as now he's older it's becoming more and more apparent that he IS on the ASD spectrum, and if he isn't a PDA'er then he definitely has shades of ODD.

Didntgetadiagnosis · 06/09/2020 13:22

It wasn't with Beacon House by the way.

What you might find more worthwhile is getting a private Educational Psychology report as that will go into detail about your son's strengths and weaknesses. And whether it would be worth pursuing a ASD diagnosis.

EdwardCullensBiteOnTheSide · 06/09/2020 13:25

Op I have a similar situation here but fortunately my child is currently being reassessed. Mine was discharged at the start of reception because although they said he had lots of autistic traits, he wasn't struggling in any way at that point. I was told that it would become evident with time if he was going to benefit from a diagnosis. He's 7 now and the school actually referred him to be reassessed at the end of last year.
Can you speak directly to your school senco and explain the issues? They can refer you. Or your gp can.
If all else fails then start the giving page, no one is forced to give.
Before reading this thread i had no idea that children with autism could get any type of dla!

hoodathunkit · 06/09/2020 13:27

Organisations like Beacon House that promote the diagnosis of DID, that recommend Bessel van der Kolk and use therapies such as Schema Therapy, Internal family Systems and body psychotherapies are of extreme concern to me.

It is a huge relief to hear that other posters here have concerns about this organisation.

Organisations that promote the idea of very early emotional trauma, especially trauma in utero, are very often linked to anti-abortion organisations generally and anti-abortion organisations promoting conspiracy theories about satanic ritual abuse in particular.

I would be amazed if, upon researching their staff and trustees, this organisation did not have multiple links to the ISSTD.

Here Dr Mark Schwartz formerly of the notorious Castlewood Treatment Centre refuses to answer questions about the abuse of vulnerable patients whose treatment included Internal Family Systems

Castlewood patients were brainwahsed into believing that they had been involved with satanic cults that murdered babies