Do you find advocating for DCs hard?

[Skiffen]

Bit of background: DD2 has had several admissions to hospital, from a few months old and has now been diagnosed with a long-term condition. After much too-ing and fro-ing she was stabilised on several medications and physio every day. We are under a hospital consultant but mostly see the GP and get repeat prescriptions from the surgery. DD2 had been quite well for 2 months on the latest regime and the consultant was happy with progress so gave us an appt for next year with the option of returning if needed before. Since then, DD2 has had a few infections and I asked the GP if we could check the treatment he was prescribing was ok with the consultant. He said he would write and request an appt for us so that the consultant could check dd2 and advise on treatment.

I have heard nothing in over a month. I rang the secretary at the hospital, who was quite brisk and told me to check with the GP. I rang the GP surgery who said the letter had gone but they'd chase it. I asked the GP when we had to see him for yet another problem with DD2, he said he'd check. I've still got no idea where we're at and I find myself dreading having to chase it all up again.

Does anyone else get in a tizz about this? I worry I am being a nuisance, that they think I'm bothering them, or that I should just be patient. On the other hand, DD2 is not well, and I know that she could possibly be on a more appropriate treatment regime if only we could get to see the right person.

My dd has a long term condition - she's an adult now so I've been advocating for her a long old time. My top tip is to be polite, but firm and persistent. The secretary can be as brisk as she likes but you are entitled to an answer to your question and now, having spoken with the GP the ball is back in her court. Call her, tell her that the letter has been sent and that you need a answer as soon as possible. Give her a date when you'll call back for the info, say in a couple of days time.

Do you get cc'd in on any correspondence between the cons and the GP? You can ask to be included.

Sometimes you do have to be a nuisance. Good luck.

You have my great sympathy. DSD has a serious and complex medical condition. She sees 9 consultants, various community services and has social services involvement. Sometimes I can spend a week on the phone to various people. Today alone I have been reduced to tears by school transport, had two exchanges with the school nurse, and talked to her social worker. My husband has taken her to a medical appointment, also seen her social worker, talked to the GP and asked the community paediatrician to chase a supposedly urgent referral that is three weeks and counting. Today was a working day for both of us.

Polite insistence is the key. Don't be afraid to pester. Contact the consultant's secretary every day if necessary, each time very politely but just checking in. Do you have an email address for her? Leave messages for the GP. Very, very often the NHS works best for those who 'shout' loudest. Good luck!

Thank you for the support, so sorry to hear you've both had to deal with so much.

I think I need to grow a thicker skin. it's odd as professionally I can be assertive and am not someone normally to worry too much about what others may think. I think I feel so vulnerable when things relate to the DCs and it's translates into these anxieties. It's such a shame that you have to chase and badger to get anywhere, but I think you're right - it's the way to get stuff done.

I do get copies of the letters the hospital send to the GP but not the other way round - I'll ask about that.

I know what you mean; it's exhausting. Far less tiring to deliver a 2 hour lecture (which is what I do for a living) than to make a single phone call to a hospital receptionist. And it's never-ending.

In our case, the difficulty is compounded by the fact that dd has problems with pain perception and anxiety issues surrounding pain, so for a fair part of those phone calls, I am going to end up with egg on my face, because there won't be anything there for the doctor to find. But I can't risk not making them, because sometimes the pain will need investigating. And any investigation that doesn't yield an immediate result is likely to tip dd into another breakdown because she has enormous guilt issues about her pain perception.

In the last 3 days we have gone from:

thinking the scan had revealed scarring on dd's kidneys after a recent infection- very worrying for all of us

to

getting the impression that the scan had revealed that there was nothing wrong- which was reassuring for dh and me but sent dd into complete breakdown

to

being told that something did show up on her ovaries but they don't know what it is so we will have to wait until after Christmas

Yes totally exhausting emotionally cory. dd has recently had a similar issue to yours; repeated UTIs, kidney scan revealing OK kidenys but dodgy ovaries. One worry replaced by another.

If you feel she needs seeing by the consultant sooner then you should be able to contact the hospital and arrange this - I have done it a number of times for DS when he has been struggling.

My issue is the other way with the GP not taking his condition seriously. He recently wanted to put DS back onto inhalers his consultant had changed, when I refused this he spent a week "waiting" to hear from his consultant. I phoned the consultants secretary and had the right medication within 2 hours.

Sometimes you just have to push and shout for what you know is right for your child.

Hope you get things sorted.

Don't be patient but do be organised.
When in contact with health professionals mKe a note of date and their name.
If you are being referred from one place to another ask referrer - when should you hear, who do you contact if you don't ( make sure you have name or specific department and telephone number).
In fact any time you are waiting to hear back from anyone always ask when you should hear back and who you should contact if you don't ( this even applies if you are due to hear back on the same day, ask what time)
Once you have a consultant ask them how you can get in touch if you have concerns between routine appointments, once you are under their care you can often make appointments directly with their team which can save time.
Before you talk to anyone make a list of questions you have and what you want by the end of the call.
You are not being pushy, you are putting your child first, and if you don't who will?

Sending strengthening to Skiffen. Hang in there- you're doing a great job!

How is your dd, DameSaggermaker?

Thank you for so much advice and support.

Dd deteriorated so we were readmitted. Got to see her usual consultant while we were in - the gp had written for advice but no follow up requested. The consultant reiterated contacting her if we were concerned so I told her how hard it has been. She gave me an email address and permission to contact her directly.

How is she doing now, Skiffen?

We're tucked up at home thank you cory. The gp surgery rang today and asked us to make an appt to see the gp, so I'm guessing they have had the letter back. All a bit behind the times but I'm going to go so that she can be checked over, and we can try and get back to all singing the same tune.

How is your dd?

Hope she feels better soon.

My dd is also tucked up at home, feeling rather rough with a ruptured ovarian cyst and on strong painkillers.

Oh no, your poor dd!

So it ruptured before you'd had the proper scan results?

stiffen: it is really hard but you are Doug great. I am fortunate that DS(anatomically unique and very complex has a great medical team. However they are spread over community and several hospitals. If DS is admitted to hospital or any major changes take place, meds change, I take it upon myself to inform the other professionals involved. Usually official letters take too long and things can be missed. Thus has so far, gone down well. DS also has open access and I have an email and mobile number for his Bain consultants.( mobile is reassuring and only ever used I emergency.

If it helps, I was told by an ed psych that the best way to get services for DS was to be, and I quote,"bitch mother from hell!'

I am not that but definitely a wolf mother. I wil advocate very strongly for DS and have even challenged decisions by consultants ( and been proved right). I have a background in Childrens rights which also helps!

Remember that you know your child best and as long as you are polite( although sometimes you may need to lose your rag to get what is needed) xx

Thanks gallivant - sorry to hear you've had such a lot to deal with.

I feel so much better now I have a direct line of communication to the consultant, and that she has reiterated me using it. I have received one of the ongoing appointments, and am waiting for 2 more. But receiving the first through so quickly gives me hope that the right referrals have actually been made.

i think that's the hardest thing, being patient and waiting for something that it turns out was never going to happen anyway!