Here are some suggested organisations that offer expert advice on SN.
Occupational Therapy - How can I get DS assessed?(23 Posts)
I have been trying to get an occupational therapist to visit us as DS (3) has sensory processing problems and is an escape artist with no fear of danger. They wont come and see us as they say he needs a diagnosis in order to be eligible for the service. I have had a core assessment from social services which again says they wont help us unless we have a diagnosis as they cant see any evidence of a disability. (Despite DS waiting for nursery assessment for ASD)
Is the only way to see someone privately? I cant afford it until I go back to work or unless DLA comes through. Has anyone ever got OT on private medical insurance?
I got it through a grant from a benevolent fund related to my work Smug. Which industry do you work in, there is probably a fund that you can access.
Oooh sounds exciting!
I work part time for one of the big accounting firms, my DH is a policeman part time. I am on maternity leave and not getting paid hence no money at the moment until I go back to work. What is a benevolent fund (off to google....)
I got the grant within 3 weeks of apply to the Bank Worker's Charity. They paid for the assessment £430, 15 sessions of Sensory Integration Therapy (£975), petrol to assessments and also a potty chair £245.
Definitely worth applying
Found DHs police force fund, looks like you have to have joined it for £2.50 a month and I dont think he has but I will check. My accountancy body doesnt seem to have one but i'll email them as they are the public sector one so they damn well should if ACCA have one!!
Thanks for the idea.
Hope you find one for your body. Did you see my caba.org.uk post?
Yes I saw the CABA one that is for ICAEW members. I am CIPFA. I will email them as they may have one they dont tell anyone about.
The national police fund looks promising but their website doesnt seem to exist so they may have closed. Will try to ring them tomorrow.
AMAZING idea though, thank you!!!
There must be one. Good luck - fingers crossed for you!
Have you tried asking your GP to refer you. I know things work differently depending on what area you live in but school were concerned about DD's motor skills and gave me a letter to take to her GP. GP referrered us to O/T at our local Child Development Centre.
Nope I hadnt - I will try that. Thank you. They expect us to be mind readers dont they. The range of people you have to ask for services and the lack of offers of help is mind boggling. How on earth am I supposed to know everything - (apart from asking mumsnet!!)
I know just how you feel !!! - plus I have learnt lots from Mumsnet too. Forgot to say if your DS is in pre-school or nursery maybe they could list some concerns which you could discuss with the GP. Good luck!
I asked Ds's paediatrician to refer him, which she did. Initially, the OTs refused the referral because some of his abilities were considered 'age appropriate'. However, when I rang them to discuss it and explained DS's difficulties (he also has sensory processing problems) and how they impact on his day-to-day life, they reconsidered and agreed to see him. I think health visitors can refer too.
Just a word of caution, smug, if you enlist a private OT don't get burned by one that colludes with other agencies and excludes you as a parent or else it will be a waste of your time and energy not to mention money. I don't know if others offer contract type documents so you are clear about what will happen and how she or he will conduct themselves. Mine was a nightmare, she did not wait for me to go to meetings, arriving early and then expecting me to wait outside and then made next to no recommendations and failed to put into writing most of what she said that would have been supportive.
DS2 was referred by paed, without diagnosis. It did take over 6 months to get in though.
Thanks all. I think DS will get assessed by an OT when he goes to the nursery assessment unit in December, but by then we will have been waiting a year and I cant wait until then. We havent even got a date for the assessment and it keeps slipping.
Have booked a private assessment for September which will cost £350. Am I right in thinking family fund wouldnt pay for this even if we get DLA through before then.
Right well just tried going to see my effing useless gp who says that she susspects that she cant refer ds for ot until he has a diagnosis either. I asked her how he was supposed to get a diagnosis of SPD from them without seeing one. "it will come from his overall care team" WTF does that mean.
I booked two back to back appointments which annoyed them to start with. I went with a list of things I wanted help with and every single one she said the team at the assessment unit would look at in December. A year after I asked for help. I know that is the norm but how can that be acceptable.
I kept saying I have private mendical insurance. I want a referral.
The best I got out of her was to say that I could ring the hospital and find my own specialists and she would write the rerreral letter. Which f'ing specialists. For what? My medical insurance company will have a field day if I ring up and say I have chosen referrals. I dont even know what type of doctor looks at the things I want looked at.
Go to a DIFFERENT GP and demand a referral to a paediatrician. The paed will do all the other referrals.
Schools (including state maintained nursery schools) can usually make a referral to the nhs OT service. I asked Ds's school to refer him which they did but that was in year 1 and he was 5yrs old by then.
The nhs OT did say though that she wished she could see the children at younger ages (reception age at least).
Does your local hospital have a community paediatric service/department? If so, you could try ringing them and ask who can make a referral. You may find that a HV might be able to in your area.
btw we asked for a referral to a paed for Ds in June of last year. We have since seen a community paed three times (referred by GP but took about 4 months to get first appointment) , an OT (arranged through the school), an EP (school's idea to refer but supported by me)
The community paed did some assessments but has decided ds is too complicated for her so has referred him to a developmental, neurological specialist paed at CAMHS, but the waiting list for her is several months at the moment.
I think we may get a diagnosis probably around 2 years after asking the GP for a referral. In the meantine though we are doing the Ot exercises and implementing visual timetables etc. Ds has defininitely improved in the last couple of months.
We have a paediatrician. I went back to see him a month ago and he has done nothing to help either. I asked him for Melatonin (said he will get back to me - he hasnt) asked for an MRI scan to check for brain damage as DS had head injury at birth (said he would get back to me he hasnt). Asked for lots of things and he said no.
Paediatrician and other experts will assess ds at an assessment centre in December but until thern they are doing nothing.
Hence why I went to try the GP route as its often mentioned that people never go to their GP to discuss problems and as I will need a DLA letter from them I thought I would also be useful to go see them. It wasnt.
We seem to have a huge number of people involved and NONE of them are useful. Is this normal? Nothing is improving. No-one is helping with the difficult behaviours, no one is diagnosing anything, no one is giving us actual help.
Can you contact the paediatrician and remind him he said he would get back to you about melatonin and MRI? Sometimes they do forget. Alternatively, could you ask to see a different paed?
I've been very lucky recently I was going to write an almost identical post yesterday - DD was born very premature (at 27wks) and had quite an easy ride through SCBU, she made good progress to start with so by a year old had been discharged by everyone (physio, consultant, eyes, ears, etc). She has been seeing a physio since December (at 1y 8mo) because her gross motor skills development had 'stalled' at cruising for about 6 months. Physio has been keeping an eye on her, seeing her every 4 weeks or so and then in April decided that she was concerned enough to refer her to the community paeds and orthotic dept as she was worried about CP.
That was in mid-late April. Since then we've had weekly physio at the local CDC. Early May brought the orthotic appt where they agreed to give her neurological insoles, early June brought fitting of those insoles and paed appointment where we got a positive CP diagnosis, and today we had an appt with physio who has promised to refer us to the OT dept and a phonecall from the paed apologising that we hadn't had the letter about the appointment 3 weeks ago, checking we were ok, telling me who she'd referred us to (joint paed/orthopaedic clinic, hip x-ray and Family worker to fill in DLA form) and offering to visit us at home one day to talk to DH about the diagnosis!
I'm amazed because my experience of our PCT until now has been pretty dire, so this has blown me away completely! These are people who get things done! (Sorry, doesn't help you, but just to say that there are some people who are good at saying they will do things but need reminding, and others who actually do them!)
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