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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

HV finally got around to phoning us - a year later!

24 replies

coppertop · 06/02/2005 14:12

Out of the blue we got a phone call from our HV asking us what they could do to help us out. I was so surprised that I had to sit down. Our previous portage worker had been badgering them for months to offer us some form of help or support but with no luck whatsoever. The last I saw of the HV was when she promised to let us know whether we would be entitled to free nappies as ds1 was 3yrs old and not yet toilet-trained. He is now 4.5yrs old!

I was just wondering whether someone had made a formal complaint about them (I hadn't had the time or energy to do it myself) when the HV added:

"Make sure you let Mrs X (our previous portage worker and also part of the Early Years Inclusion Service) know that we called. Ask her if there's anything we can do from our end."

She went on to mention Mrs X a further 3 times, again asking us to tell her that the HV had phoned!

Do you think someone has made a complaint about them? And who could it possibly have been?

OP posts:

edam · 06/02/2005 15:07

Well thank goodness your portage worker has complained!
Is your HV actually going to do anything useful for you?

anniebear · 06/02/2005 21:32

Thats terrible. wouldnt you think they would keep in touch a little more when a parent has a child with SN.

Merlot · 06/02/2005 21:43

I've had a similar experience with my HV,coppertop

I think my HV is lovely, very warm and outgoing - but she has not been near or by since the problems with ds2 have started to emerge (ten months now).

A friend of mine who has a dd of a similar age to my ds2 was waxing lyrical about the fact that the HV has called her several times to make sure that she is coping ok (her dd is NT, but she is a first time mum) and quite frankly it made me feel and .

Dont quite know what's going on here tbh - I think they are taking the lets not rock the boat approach' and she seems to be coping, so let her get on with it'.

Anyhow, glad your HV has been in touch - perhaps she wont leave it so long next time!

milge · 06/02/2005 21:50

Some areas have hv's dedicated to sn kids - might be worth investigating if your area does if you would like the support of one My area does have one, but haven't heard from her, and dd is 12 months overdue for her 18 month assessment. Can't see the point in hv's personally, our lo's generally have enough medical appts as it is!

Merlot · 06/02/2005 22:03

Milge - too true about our lo's having a myriad of appointments. I'm just miffed that there doesn't seem to be anyone to keep a lookout for our wellbeing iyswim. I thought this might be a role the HV would play (listening ear and all that, just now and again)...

Saker · 06/02/2005 22:34

Yeah my HV was the same - I was really disappointed in her. The practice we were registered with is just across the border in another county to us and I did think about changing but the HV had always been really supportive with ds1 (who doesn't have SN) and I had found her advice useful. She was the main reason I stayed. When I took my concerns about ds2 to her she took me seriously and referred him straightaway. After that I never heard from her again even though she must have seen copies of all the reports etc about ds2. She never once even rang me to see how I was. And especially at first it's a real big shock and before portage or any of the appointments kick in you need someone to talk to who understands the system a bit etc.

Anyway I recently changed practices and the HV at the new place visits me regularly and says her aim is to support me and dh. Ironically I bumped into the old HV a few weeks ago at the SN opportunity group we go to. I hadn't got the courage to say anything though - I was scared I would burst into tears. Sorry to go on but your post obviously touched a raw nerve Coppertop - I know it's silly but I was quite upset about it!

Merlot · 06/02/2005 22:42

Saker - you just hit the nail on the head!

`And especially at first it's a real big shock and before portage or any of the appointments kick in you need someone to talk to who understands the system a bit etc'

Couldn't have said it better!

Original poster

coppertop · 07/02/2005 20:47

Well said, Saker. Ds1 was referred for SALT at 2yrs 1mth. SALT didn't actually start until a year later. That was a whole year of not knowing anything about the system. Even if the HV had just mentioned portage it would have been a huge help. Ds1's reports were all cc'd to the HV but she didn't contact us even once. Our EYIS/portage worker had to really nag her to get her to turn up a year ago. That was the last we heard. :angry:

The same EYIS worker and ds2's portage worker will be at the case conference on Friday so I'll ask them if they have any advice about what to mention to the HV.

OP posts:

Original poster

coppertop · 07/02/2005 20:48

See! I'm so that I can't even do my [angry emoticons properly!

OP posts:

Original poster

coppertop · 07/02/2005 20:49

Oh I give up!

OP posts:

wobblyknicks · 07/02/2005 20:50

God, they certainly don't do anything in haste do they!!! Hope they have to pull their finger out now and actually do something

Caroline5 · 07/02/2005 20:52

Same here - have not heard a peep out of our HV since dd2 was referred for Portage 2 years ago!! We did receive a standard questionnaire for 3 yr olds asking what dd could do and I had to answer 'not yet' to every question on the list, apart from 'does your child enjoy painting?' Everything seems to be computer-generated with no human input at all !

Amanda3266 · 07/02/2005 20:53

How sad and how dreadful that you've had no support from her I'm a HV and experiences like this make me wonder what's going on in our profession. No excuse for it.

Mandy

sparklymieow · 07/02/2005 21:12

My HV phones up about every 3 or 4 months to see how we are coping. BUT she really pssed me off when I asked the consultant to refer us to the SN HV as I felt that our normal HV couldn't support us fully and didn't know too much about SNs, and about 5 months later I met the SN HV at a SN support group and asked if she had had the referral and whether she could help me with DD1's DLA form and she said "oh, ** had told me not to worry about coming to see you as she has everything under control" ggggrrrrr
What right did she have to say that when I had actually asked for the referral MYSELF

Saker · 07/02/2005 22:41

Amanda to be fair my current HV is very supportive and even came to a group conference about ds2. So it's not everyone .

Merlot · 08/02/2005 00:28

What is a HV's role supposed to be? Anyone know?

heartinthecountry · 08/02/2005 09:40

Merlot - I think in general an HV is supposed to be someone out in the community making sure that anyone who might have health needs gets them seen to - so new mums, old people, people with disabilities, etc (Amanda3266 - I am sure you can explain it much better than that!!).

I guess unfortunately in many areas their brief is so wide that many families fall through the net. I've had similar experiences with HVs to most of you. And I think because I come across as a 'coper' they have pretty much left me to get on with it. TBH unless they had specialist SN knowledge, which many don't, I don't really feel they could offer me much anymore.

BUT, I think your point Saker, about needing to see someone at the beginning is REALLY important. It is my belief that there should be someone, and I don't care if its an HV, Social Worker, whoever, but someone whose job it is to advise and support families when it is recognised that their child has SN. At the moment, it isn't really anyone's job and as such a hell of a lot of us are left to deal with it all on our own.

Hmmm, think you might have touched a nerve with this one .

Amanda3266 · 08/02/2005 09:50

heartinthecountry - I think you've summed it up really well.
The HVs role was traditionally with young families and children up to 5 but this has changed in recent years. The bulk of my work is still with the under 5's but I also take on elderly clients and school aged children where there are family problems. I see one Mum of a school age child and she has an alcohol problem - I can't say I specifically do anything for her - we just meet up twice a month so she can offload some of the problems she's having. She's not ready to deal with the alcohol at present time but one day she will be. Her son has no idea that his Mum drinks.

I also have several children with SN on my caseload - some I see and some I don't - the ones I don't see are those whose parents feel they've already got lots going on and don't need me as well. I do tell them that I'm just at the end of the phone if they do need me.

Anyway - don't want to hijack this excellent thread so will finish here and just keep looking back at the new posts.

Mandy

chonky · 08/02/2005 10:09

Similar experiences for me too

We moved to a new area 4 weeks before dd was born. She was diagnosed with SN not long after she was born - ironically it was the HV who first alerted the GP that she may have problems. I since heard nothing from my HV, despite her getting numerous reports from hospitals r.e. tests. I could really have done with the support in the first couple of months of testing, as the only people I'd met to date in the area were through the NCT, and the NCT was somewhere I suddenly felt that dd & I didn't fit (that's another thread ). I felt very reluctant to take dd to baby clinic, firstly because we were already up to our eyeballs with appointments for her, and secondly because the baby weigh-ins were done in a communal room with no privacy - I hardly felt ready to disclose my feelings with other mums in the room.

It's not all bad, we now have a fantastic community paediatric nurse who visits us and has been a great advocate for dd in terms of getting access to services.

You're right Heartinthecountry, a nerve has been touched

Original poster

coppertop · 08/02/2005 20:14

Mandy - Pleeeeeeeease come and be our HV!

OP posts:

Merlot · 08/02/2005 20:49

I'm glad someone has got a good HV Mandy

Isn't it disgusting though, that we've all had carbon copy experiences with our HV's?

Merlot · 10/02/2005 19:51

Guess what? My HV phoned today (better late than never!!) I think that SALTy must have told her I was feeling neglected as she is now coming to see me!

Original poster

coppertop · 12/02/2005 22:44

I think I might have solved the mystery of the reappearance of our HV. I spoke to our former portage worker and she said that she'd made a comment to the HV last time she saw her. She was not impressed about us waiting a year.

I was starting to get paranoid and wonder if our HVs had been reading this thread.

OP posts:

Merlot · 13/02/2005 15:39

hmmm, its a good job there are some healthcare professionals watching out for us Coppertop, isn't it?

When HV comes next week I am determined to let her know (in a nice way of course ;) how neglected I have felt. That way, it might save some other poor soul going through the same thing.

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