To refuse health visitor?

[Seline]

Hi. I'm a 2nd 3rd time mum to twins and had them prematurely. One is still in hospital and had a very traumatic time, and I have appointments for pediatricians, speech and language, dieticians, cardiologists and other specialists. I already have an older child with extra needs and so have lots of appointments for him too.

I don't see what advice a HV could give me as I'm already under such specialist care. My twins had extreme problems and aren't typical prems according to the nicu either so need specialist follow ups. We had the metabolic team involved at one point as they were concerned one had an inborn error of metabolism but thankfully that turned out to be okay.

I feel like waiting around for HV appointments would be too much when I already have so many and that I just want to be as normal as possible. I declined the Child Health Surveillance thing when registering them. I explained my reasons as above and the receptionist still seemed suspicious.

I now can't stop thinking they're going to refer me to SS or flag me up as difficult. I have anxiety and I keep thinking they're going to use that to say I'm unstable and need extra watching.

The involvement might be minimal. I had two visits when mine was newborn - one where the woman said she could see everything was fine so she didn't plan on coming again and a second pointless visit from a different hv who I thought was coming to weigh my premmie but didn't bring scales. Then I moved to a new area and had a brief visit from that team. My daughter is now 4 and that has been it in terms of visits to me. I was inclined to refuse hv involvement but it was easier to go with it.

I think for people who are more outgoing they just don't get it, but for those of us who are introverted it's a real pain.

That's my thinking re health professionals. The NICU also don't have any concerns about me, and my older child has never had any raised about him so it's not as if my family are flying under the radar.

I'll give them a call today and explain the situation. I'm a little wary after very unsympathetic midwives after I delivered (they kicked me out of the postnatal ward the day I was told one twin was expected to pass away, thankfully this didn't happen) but I'll give it a try!

As another introvert, I get how even the thought of this phone call may fill you with dread. But if it prevents countless visits to your home whilst you're in your Pjs and your children will inevitably be uncharacteristically feral, then it will be worth it. Good luck!

I refused HV involvement with dc2 after a terrible experience when he was 2 months old. I simply declined appointments and it was never chased up.

That said, I'm sure your HV team are much better than mine so if you feel like you need extra support, they might be worth seeing anyway.

Have you had a TAF meeting yet? You could ask for one to be organised and explain this there

My youngest has significant health issues, we saw the HV for the first few appointment when a baby and then she reappeared for the 27 month check which DD "failed", never seen her again. We have appointments with DDs surgeon, neurologist, geneticist, physio, SLT so are well supported in other ways. Both DH and I have or have had depression/anxiety which was known to the HV so I was supervised by the lack of support offered by the HV.

If you want the support you know how to contact the HV team, but you don't need to have anyone in your home, just let them know you get your support elsewhere.

My son has special needs and had and continues to have lots of professional involvement. My health visitor was very good at listening and at chasing things up when things like therapies weren't happening quickly enough. Personally I would at least see the HV once and then go from there.

The quickest way of getting rid of these people is to let them tick their boxes. Likely as not you then won't see them for dust. I once told mine I was struggling co.i g to terms with my eldest autism and could she look into so.e counselling I never heard from her again! I think that refusing will highlight you right or wrongly so best to do the minimum and get it over with.

Cansu may have a point. I had one 10
Minute home visit and never saw her again as she’d ticked her boxes.

As an ex HV your reasons for not needing a HV are valid and understandable.

I would write now with those reasons and say you don’t feel you need their services.

I’ve had one or two families in similar situations do this,

Generally in the end they had the first visit so forms for child health could be completed but after that I never bothered them again but ensured they had my number if they needed me, one family did ask me to sort out medication which I did.

You’ll still be sent appointments for the various development checks but you can change those if they don’t suit...these checks are generally done at the clinic so no waiting around at home,

YANBU I refused health visitor for my first as we were under consultant care and for my second as we were both fine and I was much more confident second time round.
Youngest is 2.5 and I've never had a problem from declining HV services.

I declined health visitor visits after my first as I found them entirely pointless for me personally. I’m sure lots of people benefit but if you don’t think you will then just decline. They might ring a couple of time but just politely decline you are under no obligation to see them.

I declined. I hated it with an SEN child, inappropriate and upsetting comments or advice. Upset me as well as being useless.
For the next I refused. Got a phone call, I was polite but firm. She’s three now and I honestly have no regret in doing so. If anything it helped me not getting stressed, not having to perform or confirm or do baby clinic. I still socially was happy, had friends, groups etc

Congratulations on your twins!

Sounds like you have had a very difficult time. My DS was also a hospital baby and he had to have open heart surgery when he was 5.5 weeks old. When discharged we had appointments with SLT, physio, OT, dietetics and genetics, as well as cardiology follow ups and seeing his consultant paediatrician. We were also in and out of hospital quite a bit.

I treated my HV as what she is, a generalist not a specialist. We saw loads of specialists and I didn't feel she could add anything to the input we were already getting. However, she does know about eg getting DLA for little ones with extra needs and she also kept an eye on me. She can signpost you to other services eg Portage that might be relevant for you.

But, she knew that I had a lot of appointments (because I moaned about them to her!) and she scaled back the visits accordingly. I would sometimes she her at the weigh-in clinic and we could have a chat then if needs be.

I think it is worth meeting with her and seeing if you get on. If she is not your cup of tea then you can decline further visits, but you may find the support more valuable than you expect.

All the best to you and your DCs

I declined surveillance as well with my third child as I didn't find the HV even vaguely helpful with my second and didn't like waiting in all day for her. I then witnessed a couple of incidents at baby clinic where the HV gave a mother completely wrong advice about her baby's eyes and decided that it wasn't for me.

I too got raised eye brows from the receptionist, but I explained why and she just wrote it down.

I think you probably are over thinking other people’s reactions.

You can refuse the service, it isn’t mandatory. I can’t see why you wouldn’t “tick the box” as it’s standard practice. The receptionist was likely 🤔 about that rather than the fact you wanted no HV. Or maybe she found hers a lifeline and thinks anyone who doesn’t use them is missing out. I refused CHSP too for similar reasons. No-one batted an eyelid. HV was invaluable in helping co-ordinate care and looking for specialist support though. I’m wondering if anyone can have too much support with three children with SN.

I’m also wondering what a “typical prem” is. I have never heard any NNICU use that terminology. There is no such thing as typical prem.

It might be better not refuse the service all together. My son has a rare for of epilepsy and our HV has been absolutely invaluable to us. She's been as involved as we like and really great support to us as a family and also for our son and putting things in place for him, and us. I actually prefer to keep regular visits because I trust her and her advice. Could you come to some arrangement with yours for a quick visit once In a while, I'm sure given your circumstances they will be as flexible as they can.

Delores thank you! Glad to hear from someone who has dealt with this. It's a bit of an unusual scenario I suppose as most prems aren't as prem as mine (under 28 weeks so classed as extreme prem and very low birthweight) and so I suppose may not have as many follow ups. Thank you for the advice!

My ds is a preemie too and is under the care of 7 different professionals but I find the health visitor invaluable.
She has been amazing with pushing through referrals and frequent development checks. She also links different services together for us and has given us access to other help such as portage.
Its up to you but don't write them off immediately, like you I am forever at appointments so we mostly ring each other if something needs doing.
Maybe ask for reduced input since you are seeing so many specialists all the time

It sounds like you will be getting more than enough support.

For me the Hv with ds was not only useless but actually in hindsight delayed us being able to access support as she dismissed my concerns. (Apparnetly his speech was fine.... he is 9 now and still under SALT)

When you are snowed under with appointments and interventions the last thing you need is support which isn’t actually supportive!

Ignore those saying it would raise an alert and that it's 'easier' to let them get on with it.
I've not seen a HV with my second as I have never had any concerns with him but know who to speak to if I do.
I said from the offset I didn't want support from them and they said this was fine. I have received letters with appointments for him but I called up and said I'd like to cancel the appointment as I don't need help and they just cancelled if for me. No interrogation, no judgement and certainly no alerts raised! Don't let people scare you OP.

I think it could be worth meeting the HV once to see if you like her. Apparently some are very useful. I never found our first one any good with my healthy first child and wish I hadn't wasted my time.

With my second child there were several HVs, none any good. She had special needs and they just didn't seem to know how to approach a child who was already known to be out of the average range. I opted out of the service at that point. I felt confident that this wouldn't trigger any unwanted concerns because my child was already being seen by loads of professionals anyway.

Do whatever you think best.

Yabbers They moved to low dependency and that hospital typically only has 34 weekers and above although they do accept older babies born at earlier gestation. One of my twins had very complex issues due to the birth and it was more a comment on how unusual her case was as she had a medical issue that resolved but couldn't and still can't be explained.

My son was premature, I had lots of children close together. I found my health visitor quite irritating and was fed up of waiting for hours for her to turn up and never calling with an exact time. I wanted to be out at the park getting some fresh air and letting my toddlers run around!
I simply told the doctors surgery and just never heard from them again. He’s 6 now

"I hated it with an SEN child, inappropriate and upsetting comments or advice. Upset me as well as being useless."

Yes, I found that too. The other professionals were more matter-of-fact about my child's problems, whereas the HV kept indicating "concern" at every little thing. Given that these issues were already well documented, I really didn't need her to keep telling me how worrying it was that my child couldn't do this and this and this.

For example, in a normally developing child it is worth noting and commenting if the child doesn't make eye contact. But my child was blind at the time. The HV really didn't need to make a song and dance about ticking this box, suggesting that it might mean her social development was problematic!