Can't get help for health issues

[cantgethelp]

Does anyone else experience this? For absolutely years now we've been unable to access any help for various health problems on the NHS. This started with ds1 who had pda/adhd and has been left with an eating disorder which is impacting his physical health. It was also only by a complete fluke that I managed to get an ssri prescribed for him for severe anxiety as a teenager.

I've had bladder issues for years and they just shrug and tell me there's no infection present, when I know there is (frequency and urine smells).

Gallbladder issues for years which is now affecting my pancreas but nobody seems interested, yet when I was sent to the surgical assessment unit, the nurse refused to believe I'd never been hospitalised as my amalyse was very high.

Dh has had low ferritin for years and they keep sending him for endoscopies which are clear. He apparently needs an iron infusion. Guess what? Nobody actually knows how to fix him up with one. We've looked at private help, but it's down in London and we live at the other end of the country.

Ds2 has autism and has terrible mood swings, self harm and gets suicidal. Was fobbed off by mental health. Paid for a psychiatrist who referred him for dbt on the NHS, but they won't do it and there's no help for him.

Who are the people who do manage to get help? I know there are clinics going on and some people do get seen for things. I know we're not lying there bleeding out, but surely there must be something available for moderately bad conditions which need treatment. We're all in varying levels of pain and difficulty. At this point I've just given up.

It’s clearly regional as the service round here is excellent - appointments same day or same week, referrals, home visits , follow up checks

buts it’s down to cost - no one wants to pay anything like what you need to for a decent health service / the rich would rather pay loads more going private than stump up more in taxes to help others as well as themselves - bizarre but there you are

Yes I'm wondering if it's because of the area. It is a poorer area. Ds1 lives in London and his adhd meds are always available too.

Poorer areas tend to have far more people with serious health problems and not much in the way of additional funding to help - giving you an over stretched local service and people who can least afford to help themselves being shafted as per normal

Blimey

Has your DH at least been given liquid iron to take?

If they don't know where he can get an iron infusion, they better find out. Are you coming up against complete inertia? Some GP surgeries can make you feel completely hopeless in that way, but the resources are actually around.

I hear you. I have an autistic child who has lost over 10% of body weight, various other issues going on. Paediatrian and paed dietians says she needs psychological support, cahms say they have no path way and tried to send her back to level 1 support service who say it’s well beyond what they can support.

I sit in TAF meetings with multiple professionals (never cahms) and think how much money does the salaries in that room add up to but there is not actually any support to change the situation.

The whole system is broken.

It's very hard to get medical help for physical ailments where I live too, and mental health support is basically non existent on the NHS due to funding issues/lack of resources. I'm sorry that you and your family are having such a difficult time. Are your sons entitled to PIP for their diagnoses? It would be worth looking into if not, as this could be used to fund some private therapy for them. Good luck, its horrible when we aren't able to access help for our children

Yes he has iron tablets from the GP and also takes liquid iron and spatone. He can't take the iron tablets every day as they upset his gut. I thought getting an iron infusion would be a straightforward thing but apparently not.

We haven't applied for pip as I don't think they'd cope with the process. Ds1 is working and earning enough to rent a room and he sees his friends and goes on holiday it's just he over eats and his weight is a big concern. He relies on snacks to cope with his adhd. He is on ritalin but doesn't take it as much as he should because of side effects.

We support ds2 as much as we can. He wouldn't cope with applying for pip.

Has no ever mentioned interstitial cystitis or overactive bladder? Dip tests for water infection are known to be unreliable. Have you had antibiotics? My sister was diagnosed with gallbladder issues and had her operation to remove all within about 6 months.

Don't know what atea you're in but I'm West Lancs but our docs and services are fantastic. I don't know what else to suggest apart from keep pushing and could you go to PALS for support.

Everything just seems to have layers and layers of complexity and then the obfuscation if you do manage to get to see someone. They try to minimise and deny there's a problem, then you have to politely argue your case, then they don't read the notes so argue back.

Dh has been sent for repeated endoscopies because they can't understand why his iron is low as if doing the endoscopy is going to cure it or something.

I haven't had antibiotics for a while and just avoid fluids which irritate my bladder. I don't think they'd even know what IC is to be honest. I drink a lot of plain water if the urine smells and it gradually gets better. I take a herbal remedy too. I've given up seeking help for it as they just dip it and I get a blank stare if it doesn't indicate an infection. It is infected though because it's ended up in my kidneys twice before and the smell is the same. Kind of a mousey smell.

I've been bleeding vaginally for nearly 11 months. At times, I've haemorrhaged and been hospitalised. They originally said there was a 52 week wait just to see a gynaecologist but fortunately, my GP is excellent and pushed for it to be done as urgent (took 8 weeks instead).

I'm on the list for an urgent abdominal hysterectomy which theoretically should happen within 12 weeks. I'm 6 weeks into waiting and they've just told me it'll be at least another 35 weeks as they're so swamped. I'm horrifically anaemic and in daily pain. I feel like I'm losing my identity and barely coping.

I often find myself wondering if I'd be done for neglect if I treated an animal like this.

So I suppose I'm lucky in that I'm accessing services but the services are so bad that it's glacially slow getting any kind of resolution.

So there's a couple of people here as well as the OP

Sorry if I'm stating the obvious, but have you complained to the practice manager?

Is it possible that your practice is particularly crap?

if you've complained to the practice manager, then the next step would be to complain to the ICB.

I'm so sorry you're going through this.

There are huge regional variations, both myself and a long term friend have been investigated for very similar issues via consultant care and mine has been much quicker.

There is also and I do hate to say it the way a person articulates themselves . I had an awful medical emergency quite a few years ago and the Dr I saw well he was pretty disparaging about some of the people he saw.

www.nice.org.uk

Nice guide lines every individual has the right to full health care,
Maybe have a read through and mention this next time you see your GP .
As for gynaecology I would request you see a nurse whom specialises is women’s reproductive health care.
Perhaps consider making a complaint at yoir
GP surgery due to lack of medical support and state the NICE guidelines.

You poor thing, that's definitely not right, something is going on. All I can suggest is keep pushing. Ask for a referral to urology. I'm sure these days if you ask your doc to be referred they can't refuse?

The GP surgery aren't too bad and they do refer but then the hospital just bounce it back and then we don't get seen. Ds2 has also received phone calls to inform him that he's not entitled to dbt. Dh also received a phone call from the receptionist to ask him if he wanted to be referred to haematology for this infusion, then haematology ordered yet another endoscopy! It just goes round in circles. It's the same with every illness.