Feeling like a burden

I've had similar problems with the mental health services.  In fact recently I was refused any help or counselling from a department I had visited prior to my diagnosis, because I was now officially classed as autistic - you can't make this stuff up.

I keep hearing reports on how draining autism is on the health service, yet it seems to be everyone is missing the point that it's not until we are at crisis point or worse that intervention happens - this is often ineffective and costly and far too little help far too late.

I'm sorry to hear about the trouble you're having, and how much poor services are getting you down. As others have said, the system is placing to much of a burden upon you, not you upon it.

Starbuck said:

lack of will to problem solve cases to get to the bottom of what is going on.  Why cure the problem when it is much easier to treat the symptoms.

The story of my autism diagnosis is much like that. I've been backward and forward between mental health services for 30 years. GAD, bipolar, and personality disorder have been confidently suggested by staff who never attempted to confirm any of these diagnoses by formal assessments. Two counsellors, spanning two decades, wrote to GPs suggesting psychological assessments that didn't happen. My first two attempts at an autism refusal were rejected because the CCG wouldn't fund them (the NHS unit which finally diagnosed me didn't exist at the time.) I always knew that there was an underlying problem causing my poor mental health, and always tried to point this out, but to no avail. Meanwhile I was given one generic treatment after another, none of which had much noticeable effect.

At the moment, I'm trying to obtain autism-specific CBT. I have had a little before (by luck rather than design) and found it very effective, and some of the issues I want to work on are directly related to my autism diagnosis. So far...

• The post-diagnosis counselling and OT promised at my autism assessment four years ago never happened. The unit is so short-staffed that all follow up has been abandoned in order to cope with the assessments waiting list.
• I had to approach multiple agencies in order to access an advocate, who discovered a non-profit autism service that might be able to provide the counselling and mentoring services that were recommended at my assessment.
• This requires a social services referral and budget, plus a service-user top-up fee (expected to come from PIP.)
• Two years appealing PIP so that I can afford the service-user top-up. I lost the advocate about a month before the second of two tribunal hearings, at which my original zero points magically became a need for high-rate daily living and low-rate mobility.
• Shortly after which social services rejected me because I don't have a learning disability. The Autism Act 2009 specifically says that this is an unreasonable cause for rejecting an autistic person; the council says that it's the NHS autism unit's responsibility, as there is no social services department which deals with purely developmental conditions.
• Checking back with the service provider, they said that I may be able to get just the counselling if my GP can obtain discretionary funding from the CCG (like the two autism referral rejections!). My GP sees no reason that regular mental health services shouldn't be able to do it despite my autism-specific problems and previous experience of ineffective generic counselling. I haven't got around to requesting an appointment with another doctor because, quite honestly, the whole process makes me more ill than sitting at home doing nothing, and I need a rest.
• Even if I get the counselling, this would be limited to a maximum of ten sessions, and each service user may only access it once.

If I wasn't autistic? "Hi Doc, feeling really down lately, I think therapy might help." Referral on the spot, and, sure, maybe a bit of waiting around, but not years of the frustration and anxiety above.

Wow I can't believe this is a common thing.

Sorry to hear you are all having health issues that have been problematic to be treated or are ongoing.  There is nothing worse than being ill and not feeling yourself.

This has helped me beating myself up somewhat, but I agree that the cost to the NHS must be phenomenal and how lucky I am to have access to free healthcare as I could never afford treatment through a private health care system.  Isn't ironic that those that are most vulnerable and susceptible to health complications are often the most likely to be mixed up in the bureaucracy of the modern healthcare system.

It seems that we all don't fit neatly into those little boxes that are typically textbook.  I know doctors can't possibly know every single medical ailment in detail as well as the drugs that go with it, but I do find there is a lack of will to problem solve cases to get to the bottom of what is going on.  Why cure the problem when it is much easier to treat the symptoms.

Now that I am home I am feeling a bit down - my employer is asking questions on why I am not in work and whether this will be a regular thing, my family is worried and my partner is also worried that this could be something potentially very serious.  I don't have answers for any of them despite desperately wanting to give them solutions to the problem.  I feel like a bit in limbo land and I am not one to jump to conclusions on illnesses without sufficient evidence, but I want answers as my symptoms are getting worse and more frequent to the point it is impacting on my life daily now.

I shouldn't be moaning as there are a lot of people in the world much worse off than myself, but after suffering with this illness, it leaves me feeling a bit lost and hopeless.  I'm sure I will get to the bottom of it one way or another though.  Thank you for sharing your experiences.  Hope everyone is feeling well despite all the complications and medical faff!

Hi Starbuck sorry to hear your going through so much at the moment.

Please try not to feel a burden, it really isn’t your fault the system is working,

I too hate visiting doctors or hospitals.

I have a chronic bad back which initially I was told take these pills, about five years in now, they are only supposed to be used for weeks not years, 

Eventually after so long when it got that I was losing feeling below the waist I went to the gp who listened and sent me for a scan, prior to that I had two X-rays which were obviously a waste of time as the bones weren’t wrong, it turned out to be three discs that leak under load, which in turn press against the spinal cord,

the gp thought I would possibly be paralysed for life any time soon as the symptoms I had were bad, they said I must go to A and E immediately but not to drive, get a lift or they would call an ambulance.

So scan done but no follow up, I booked an appointment but still no feedback or way forward, take the pills.

I also have near constant gut ache, apparently common amongst Autistic individuals!

All my life I have stomach pains, I have tried leaving out various food groups,

As I am typing my stomach is in pain, yesterday it was bad enough to take my breath away.

I have had tests in the past including many blood tests and I am the fittest fifty plus year old they know? Perfect weight and apart from smoking all my life fit as a fiddle.

I end up researching my issues as nothing gets done other wise.

even had to research the pills for long term side effects, turns out one was causing my magnesium levels to drop giving me joint pain and cramp. I now take a supplement,,,the gp had no idea the pills could do that! It was a research paper I found after many hours looking for an answer.

So to sum up,,,,the system is bad for everyone, for us it is worse as the issues we have are indeed different and medication doesn’t always work for us.

please take care and if the system are trying then let them, it isn’t our fault they haven’t the resources or knowledge, that’s society and governments as a whole.

Sorry to hear how you are feeling. The health system is incredibly complicated now - we need a properly integrated, person-centred service where clinicians have expertise and skills relating to health and autism.

In the hope of making you feel better, I have had the following interventions over the last 2 weeks for an ankle problem:

2 telephone calls to the 111 service (out of hours)

2 visits to the urgent care centre (initially for assessment, then for X-rays) 

3 appointments with GPs

2 telephone consultations with Nurse Practitioners  

2 referrals for physiotherapy (self referral followed by GP referral) 

1 appointment with a Nurse Practitioner  

1 appointment with a physiotherapist 

3 different diagnoses (they got it right third time!) 

I dread to think what all this has cost the NHS. Much earlier diagnosis by someone capable of assessing my condition properly would have been so much more cost effective and far less stressful for me! 

Do not feel bad, it's the way the system works that's the problem, not you! 

The NHS is a "one size fits all' mentality, we don't fit in their boxes. Our bodies are different to NTs therefore we are prone to things out of the norm for most GPs/frontline NHS, my GP looks at me sideways sometimes, but he's starting to get with the program, Science always proves me right. :D

If your body is telling you there are issues then there are issues.