Update and thanks (including social services news)

I’m coming to the conclusion I’m absolutely useless at replying to comments on my posts, but please know that I do read them all and feel incredibly grateful for people’s advice, kind words of support and best wishes. Rather than go back and reply individually, I thought it’d be easier for everyone if I just post an update here, including me finally but fairly politely losing my rag with social services 👀

Clinic went well; she’s put back on about half of the weight she lost whilst on the antifungals for a month, so about 3lbs in 2 weeks, which is good going, and her spirometry was really, really good. So good, that we’re still provisionally booking a bed for the start of Jan (which will be 8 weeks since she finished the last course of IVs) but will review in clinic just before and see if we might be able to stretch the gap out a bit, assuming that she behaves between now and then, of course. Typically, having had a glowing review, she has seemed a bit more chesty for the last couple of days. The only downside is obviously that she’s cultured this NTM, and her consultant did caution us not to get too excited over how she is atm with that still hanging over our heads, but we should have had 2 more AFBs back by Jan that are in progress from the end of October and middle of November, so we may have some idea of where we are with needing to treat it then. Strictly speaking, their protocol requires 3 samples over 3 months - one a month -, so they’re also going to run the one from clinic, but with a cook time of 6 to 12 weeks, that probably won’t be back until the middle of Jan at the earliest.

After I’d had a few replies from people encouraging me about the social services nightmare, I put my big boy pants on and managed to get hold of our current key worker. She’s nice enough, but pretty ineffective, and I suspect that’s partly because of the way the department runs. I very plainly told her that we’d been here for 5 months, that we were made known to them from the day we moved into county by a referring social services team, but that despite repeated requests we hadn’t even had a proper assessment of needs yet, and as a result we are hurtling towards crisis. Which is in part because we haven’t spent more than 4 hours apart since the 31st of July, and that was only achieved because the ward staff are so good with her and could see I was a dad properly on the edge. I also said that no one was giving me a valid justification for repeatedly refusing a formal Child and Family Assessment (which is what we need to be able to access respite where we live, assuming they find you entitled to respite at the end of the assessment), but just got lots of vague noises back about department restructure, and panel said this, and last but not least, you have to ‘try your package of care for 3 months first’. Which was when I said enough is enough, because our so-called ‘package’ solely amounts to direct payments worth £600 a year for small person to attend a social group once a week, they can’t even tell me when to expect the payments to start, and the group has to be booked a term in advance - they’re booking for next term now, so even if the money magically materialised today, odds of me getting her in for January to Easter are virtually non-existent. All the other requests for specific support made to panel were refused outright, so whichever way you look at it, calling the funding of one group a week a package of care seems to be stretching the truth somewhat, and had they acted sooner (which is another story entirely) then we could have had the direct payments in place months ago.

The minute I quite angrily said, and I quote, ‘look, bottom line here is we’re almost in crisis and you are completely failing in your statutory obligations to assess a family you’ve been informed are in need by other professionals’, everything changed. After nearly 10 minutes of back and forth, and sympathetic but meaningless platitudes, and then some outright dismissalsand denials, she immediately put me on hold and came back less than a minute later saying they were transferring us to a social worker who could carry out an assessment and would do the CAFA, but wouldn’t be able to get it done until January at the earliest. So it’s good news but utterly infuriating at the same time, because it shouldn’t have required me to call them out like that for them to meet their legal responsibilities, and I can’t help but worry about parents who don’t know the council have to act, they don’t get to choose who gets assessed and who doesn’t, and definitely not when it seems to be based purely on not wanting to have to spend any money. They’d already tried to get health to cover the cost of support by referring her into other teams that I knew she didn’t fit the criteria for, and when that didn’t work, appear to have come to the conclusion that if they don’t do an assessment, our needs don’t exist and they don’t have to meet them.

Anyway, we’ll still be white-knuckling it for quite a while yet until the CAFA gets done, and even once it is it could take several months or more to get the over night respite organised, but at least we’re a step closer. I should have been more forceful with both social services and education sooner, but being in 5* for 6 weeks since we moved hasn’t helped, and there is a limit to how much I can deal with when my day to day is spent single-handedly managing an incredibly anxious small person’s health and behaviour and there are nights she barely sleeps.

[Hidden]

Oh Charlie there aren't words for the abysmal non service that these supposed professionals are giving you. Isn't it amazing how they jump when you use the appropriate language to describe their duty and lack of compliance

. Now that the election is over why don't you get in touch with your MP, describe the situation and your needs (you are very good at that) and ask them to get it moving. My MP has helped me with recalcitrant health professionals and the QE in Bham when they were messing me about. Just a thought but you spend so much time fighting on your own that it's time that the cavalry arrived with a cannon!

[sassy59]

Thank you so much for the update on your superstar little person Charlie. Such a traumatic time for you both.

As Littlepom says, you have been badly let down by so called professionals who are supposed to help.

Do keep pushing forward and continue to be very insistent that your daughter gets all the support she needs and more. Good idea to get your MP involved as you need support for you too.

Take care and hope you can and will have an enjoyable Christmas.

Very best wishes to you both. Xxxx

[cofdrop-UK]

Good on ya Charlie. You have so much to deal with and the neglect of duty from these services is atrocious. You must have been at the end of your teather.

Thank you so much for Giving us an update. I have been worrying how you and little E have been getting on.

You’re a Dad in a million.

Love cx

[Caspiana]

Hello Hidden ,

Wow. Just wow. How in does social services function? In fact they don't seem to be functioning at all. How stressful for all of you. 😐 I can't imagine how much of a,toll this has taken on your entire family. I do hope they will now take it seriously.

I have long since known about your little person and I believe she has CF? I am part of a lung transplant group and I noticed almost all the CFers have lung transplants as children and then again as adults. Is your little person going down that route at some point? I am quite curious as I have never met a CF patient who didn't have a transplant during childhood. Sorry for the question and I hope I don't come across as impertinent.

Warm wishes,

Cas xx 🙋

[Hidden in reply to Caspiana]

Not impertinent at all, and with many people under the impression that precision meds are almost a total cure for everyone with cf, I welcome any questions about treatment. Apologies if I ramble or go off on tangents a bit, but I wanted to give you a thorough answer.

Transplant in childhood is actually rare now as a result of improvements in treatment and understanding, although there are still a handful on the list each year. The figures are tracked on an annual basis via the CF Registry report, which along with stats about how each specialist centre is performing details everything from how many people in the UK are using each of the main inhaled antibiotics to how many people have which mutations, and is available to the public on the CF Trust website. Numbers requiring transplant in their late teens have also fallen significantly, but 50% of people with cf will still die before the age of 40 as things stand. Obviously this doesn’t take into account any effect we might see from the new drugs like Orkambi, but these drugs don’t work for all patients (there are over 9000 patients worldwide, small person included, for whom none of these drugs either available now or in development are relevant) and talk to many of the experts and, whilst they welcome them, there is a concern that the real benefit of these drugs may be less than patients and families desperately want them to be, particularly as up to a third of patients see relatively little improvement in spite of having the correct genetics, and some sets of data show anything between a fifth and a third finding them intolerable to take due to side effects and medical events. The newer drugs in the pipeline are showing more promise, particularly Trikafta that was just approved in the US, but the bottom line seems to be that the benefits of some of the precision meds are not as great in practice as they were originally made out to be.

I’ve always been very strict with treatment and up until recently (teenage years are officially here and far too early) she was probably 99% compliant with nebs and physio across the year, but small person still only has a well baseline fev1 of low to mid 70s aged 11, despite rarely missing a single dose of anything and being on routine IVs since she turned 2. Whilst her previous tertiary team were quite dismissive (‘she’s not the worst we’ve got’), partly because they refused to believe her numbers were accurate but didn’t have the ability to run the tests needed to confirm if they were accurate or not, her new team have run those tests, found them to be in their words ‘grossly abnormal’, and refer to her as having low lung function for her age compared to the majority of children with the disease. Which would explain why most parents I meet look at me horrified if the subject of lung function comes up, because most would only expect low 70s if their child was actively unwell, not as their best. She’s therefore described as being at the more severe end of the disease spectrum, and even if they wouldn’t acknowledge that, her naff team we left behind in the summer did admit to her being a complex case.

Whilst it may sound morbid, given her history, that she’s got at least one chronic infection if not two, that we’ve regularly been seeing haemoptysis with infections for the last 2 years, and that she’s needed around 50 courses of IVs to date, my personal view is that if she makes it to the age of 20, I’ll genuinely be both very pleased and pleasantly surprised. Her fev1 decline over the last 18 months has been fast (about 10%), and if we can’t get a handle on it and it continues at the same kind of rate, that would have her en route to being assessed for transplant by the age of 16 at the latest. But even if we manage to slow the loss of lung function, short of a real breakthrough such as gene therapy, I don’t currently anticipate her living a long life, and even before this period of decline began her old, local consultant did voice the opinion that he wouldn’t be surprised to see her needing a transplant by her late teens. I also don’t dwell on the future, though, and resolved a number of years ago that you have to live as much in the moment as possible, because any of us could get knocked down my a bus tomorrow. Which is why my standard of housekeeping has become ‘if social services walked in here, would they have problem?’ - as long as the answer is no, there are far more important things I’d rather be doing to build memories with the small person and give her the fullest, most enjoyable life I possibly can for however long it turns out she’s here.

[SORRELHIPPO in reply to Hidden]

As an Occupational Therapist, I once had a couple referred to me as they "were not coping and the home was in a poor state". Both of the couple lived in wheel chairs. I visited had a good time, a cup of tea, discussed the equipment we had and we worked out very little of it would help. I want back to the office and told the Social Worker the truth, that this couples home was no worse that mine, and maybe she could offer a Home Help. The Social Worker then thought I was a slut or is it a slattern, however I felt she was nuts, so we were about equal. The idea about the MP is great and maybe also a Local Councillor, you could also add in CAB, the more the merrier after service like this.

[Caspiana in reply to Hidden]

Thank you for your detailed reply Charlie. I wish you, your little one and your whole family a peaceful Christmas. xx 🎄🎀🎄🎀🎄

[Ergendl]

How awful to have to resort to such confrontation to get your right to an assessment acknowledged. All the best from here on. The suggestion above of involving your MP is a good one. It has worked for me in the past.

[peege]

You are a dad in a million, my heart goes out to you. Well done for achieving what you have so far.

It's a sad fact that SS are appalling. Some mean well but the service is broken. They are also all powerful, two people I know lost their rags with SS, both had their process halted, one was put on anger management course before. Deep breathing through the exasperating times.

I really don't know how you cope and salute you.

Best wishes for the near future to you and yours. P

[Izb1]

I wish you and your little one all the best Charlie and hope you get the help you need without having to fight any more for it. I think like the rest of us on here that you are a dad in a million x