Struggling with multiple disabilties

[Becca19962014]

I've really had enough of my disabilties. Don't get me wrong it's never been "easy" but right now it's just too much. Even posting here now is becoming impossible because moving ads are causing me problems (I can't have adblocker due to age of device or any alternative browser)

I have multiple physical needs and deterioation means I can no longer travel anywhere. I get days when I can't even get out due to either physical pain or severe anxiety (I've done CBT and other therapy and cannot have meds due to physical conditions) and I've begun having seizures daily along with migraine (which is thought to be connected to the seizures).

I'm struggling with multiple major bereavements and my mental health is suffering under it. I won't go into details but one was a very close friend to suicide and all the details of that has been splashed over the local news.

On the insistence of my GP I was referred to the community dental programme - I have very severe dental phobia, I can't even go near a practice without vomiting/fainting (even writing this has made me sick). Again I've tried and failed at therapy - my fears aren't unrealistic so it didn't help because the therapy was based around my fears not being grounded in reality. My GP said I was at risk of sepsis and must be seen and got a referral accepted - it's almost impossible for that to be done. I've just got an email saying their office in my county isn't accessible so I cannot be seen - it's up three flights of stairs. Not only did I cause myself a lot of distress (think crisis point which requirement hospital treatment) doing the stupid form describing my phobia but it's all been for nothing because i cannot manage steps. There are no dentists in my county accepting patients and that's private not NHS. I couldn't have the treatment anyway as due to my conditions I'd need to be admitted to hospital and need family to care for me as I need my jaw removed as well as teeth and don't have that which the hospital refused to accept - I was booked for the operation years ago and it wasn't done due to lack of help at home and no it can't be carer as I'll need 24 hour care and I can't pay and council won't as the op isn't in my county.

I cannot move. I've no family and rely very heavily on the few friends I have where I live, who I do my best not to burden with how bad things are getting (though they've noticed).

Today I had an appointment where I was lectured about needing to try harder to travel to hospital appointments - it's not that simple. Even when I could travel all I'd hear was about ignoring my other disabilities to have treatment which more often than not would fail because of those disabilties I'm supposed to ignore - I've multiple needs but that's just not recognised. Example I saw a diabetes nurse who told me to ignore that I cannot use my hands/oven safely (due to epilepsy) and to begin cooking everything from scratch. Similar happened with the OT. Just because my needs aren't convenient they're still my needs. I have severe mental health issues I can't take meds for safely. I've physical needs that are badly misunderstood - it's extremely rare anyone has even heard of dysautonomia never mind knows what it means, Ehlers danlos more have heard of but think it's just bendy joints, other conditions I've got due to them have been dismissed.

Can anyone relate? Because I just don't know what to do anymore. Every appointment I get told to forget all my other needs and concentrate on one and I can't.

I'm struggling with migraine right now so I may not reply for awhile, I am not, ignoring any replies!

If anyone remembers a previous thread about my needs I did get PIP without a medical as the medical services said I didn't need to be seen. However, that money goes towards needs which aren't covered by NHS here.

I'm sorry it was long. I hate drip feeds.

I'd appreciate any advice, or even people relating!

I can't even begin to imagine how demoralising and frustrating and just generally shit it is for you. I find it hard enough juggling just a couple of much easier to manage/better understood conditions!

Sorry I have nothing at all useful to say. But I couldn't not reply. And I do have

I can relate to you, OP.

I have many issues from head to toe...

Prolonged hormone related migraine (blackouts & driving license taken away)

Restricted neck, arm & shoulder movements owing to autoimmune inflammatory arthritis which also leads to...

Enthesitis (incredibly painful ankles leaving me unable to flex my feet ie walk)

Sacroillitis (sore, tender to the point of being unable to wear clothes) spine and hips with restricted movement

Asthma (part of having an autoimmune cond)

Iritis (blindness) Also part of having autoimmune issues

Plantaar fasciitis

Bone spur growth pressing on nerves pinching restricting movement

Allergic to one specific medication I need so have to use Epipen regularly

I have to inject a Biologic weekly, take my brown asthma preventative daily, take Naproxen twice a day and have hot water bottles for my spine. I also have to inject a blood-thinner to prevent clots on my brain. Oh & antidepressants (not surprisingly)

I have a GREAT GP, a fantastic rheumatologist and a fabulous neuro consultant. They all see me individually however they all also communicate well with each other by phone & email to chat about me regularly, about 4 times a year so they’re all in the loop and to make sure they’re all happy with the existing medication plan.

My dentist is private but also liaises with my GP about my consistent tooth infections (also bought on by the autoimmunity) to make sure he knows what doses of Amoxycillin etc I am on.

The key you need is for all of your healthcarers to get together & agree a plan of action moving forward.

I am sorry you’re in this situation. Unless you’re in it, you don’t understand at all how crap it is. We didn’t deserve this

Hi Op,

I too have multiple disabilities so I can definitely relate to your situation. It all sounds very demoralising and stressful, a few things stand out from your post that can be addressed easily.
Hospital and other medical appts: if you cannot easily attend appt then use free Hospital transportation, yes this can lead to waiting around for return journey but I always take a good book and plenty of snacks & drinks.
GP, nurse, bloods, ot, podiatrist etc all have a duty to visit you at home.
Some areas have community dental services, where in the country are you?
I understand that you have severe phobias but if you're at risk of sepsis this really needs addressing. Dental disease can make you feel very very unwell, getting it sorted will have a positive impact on your overall wellbeing.
From what you've described you have some very clear needs relating to your health, this is the responsibility of the health care system. You need to ask your gp to organise a FACE assessment so that you can access Continuing Health Care funding. This would provide care so that you remain safe, have adequate nutrition and social interactions.
It would also provide 24 hr care following surgery should you need it.
Because of the nature of your conditions being rare it would be really helpful to put together some basic information for any hcps you come into contact with even if it's just website addresses where they can access more information.
Hope this helps.

The problem is the professionals are in conflict with each other! I don't have consultants anymore as I can't travel and my physio is private (paid for by credit card and pip) as I've had the maximum allowed by the NHS trust here. The physio and GP liase fine.

I can't manage hospital transport - it's hours and they don't stop. I cannot even travel ten minutes never mind hours. I have tried, many, many times. But (roughly) eight hours round trip in a day plus a consultant appointment is impossible for me physically and mentally. It's not that hospital transport have been horrible or anything like that, but I'm right at the furthest point for it so I need to be able to go roughly four hours without food or water or toilet (which is impossible), last time I was ill in the car and needed to come back - less than twenty minutes away! I'd need multiple overnight stops to get here and back due to deterioation and hospital transport is there and back, with many stops on the way for other patients. Example, my last successful appointment with them I left at 4am and got back at 11pm (due to other patients appointments as well as mine). I'm nowhere near well enough to manage that amount of time now - I spend hours each day in bed in agony. Another issue is they won't do indidvual transport anymore and from September (I think) people must contribute to the derive because they can no longer afford it. Most services are now in South Wales and a consequence is very expensive transport.

My GP does their best, they are really the best, I nominated them for GP of the year, they didn't get it but I nominate them. There's no consultant services here now they've all gone to South Wales which I cannot get to.

My specialists did communicate my issues but a psychiatrist disagreed saying the conditions weren't real. The GP, physio and orthopaedic consultant went and gave a presentation on them (letters from specialists as they're in London) and the psychiatrist told them that in their opinion I'm physically fit and healthy. Now they won't engage with mental health under any circumstances. Community services won't engage because of this conflict - basically the psychiatrist instead of accepting they were wrong, which given the rareness of my conditions there was no losing face in this got into a fight and said they were right as I'd not had the right childhood to be telling the truth whatever the tests said. The local non specialist rheumatologist told me Ehlers Danlos and dysautnomia don't exist as did the neurological dr I saw - all because of the psychiatrist letter. So my notes massively conflict. Yes I've complained but it makes no difference.

Community dental services is up three flights of stairs and so not accessible to me I did put that in my op, which was very long and probably you missed it, there's no other option. I can't have general anaesthetic so cannot travel without being seriously unwell. With regard to being helped at home after op, if o could travel and if I could get anaesthetic, I was told this isn't an option because there's only funding for treatment from agreed health boards and there's only one dental hospital which isn't in the agreed catchment - that's why it was refused. I was told I must stay with family, and no, they won't accept that's not an option because the abuse I suffered didn't result in prosecution by cps.

I do have information on my conditions but it's ignored if I see other professionals. The dismissal by the psychiatrist is on my notes - no hcp will accept information from me with them saying I lie, even though I don't hcp won't pull all my notes to find letters.

Continuing health care funding isn't available in Wales, it's different here.

And thankyou all for your support!!! It means a lot (and leslie for cake!!)

It's just such a fucking mess. Nobody should have such a struggle to get basic healthcare. I wish I could do something to help you.

its such a fucking mess

I should have put that as my title. I really should. My GP says the same, only politely. I'm very far from being the only person with these difficulties in (very) rural Wales.

It should be so much simpler, see specialists, get diagnosed, get treatment or try it and if get worse get support with that but not this "ooo I don't think that's real" crap.

Instead I've a psychiatrist who is, frankly behaving like a spoilt fucking child screwing everything up.

I've severe medical phobia as well which took years to work on, my last admission pushed me right back (I was refused care on the grounds I was a liar - yes I complained but was ignored).

OP I didn't miss the bit about the dentist being inaccessible for you, there are dentists who work in the community visiting health centres, nursing homes etc.

I think you've posted before about your very difficult circumstances, I'm pleased to see that you are at least receiving PIp payments now.

Complaints made to the NHS can't simply be ignored but I really don't know what to suggest other than to use the PALS service.

Are you sure that CHC funding isn't available in Wales, they must have some alternative to fund care for people who need home ventilation, have conditions such as MND etc.
I would urge you to ask for a different psychiatrist.

I'm out of suggestions but I do wish you well, keep posting here because I'm sure someone else may have more knowledge than me.

My apologies, I didn't realise and shouldn't have assumed, I did so because you mentioned it, they only see patients at their office there's been no offer to be seen elsewhere, I wasn't aware that was a thing. It says treatment can only be offered there.

Yes I did post re pip before.

I've referred the complaint to the ombudsman, I forgot to say that. Sorry.

There is no other option for psychiatrist - they run the service in this county. There's no option to be seen in another county.

CHC doesn't exist here, it's funded very differently according to set health boards, hence the problem I'm having with treatment (should a miracle happen and I could travel can be well enough for the operation) I must fund private or go back to (abusive) family. Funding for other conditions is specific to those, though the same issues come up with travel.

I hope you don't think I'm being dismissive of your suggestions, I'm not, and my apologies for the misunderstanding over community dentist.

I can relate OP. It completely sucks

Thankyou.

I think the thing that's really upsetting me is the community dental service lied about being disablilty friendly, making a huge fuss about being able to deal with multiple needs and then they email (at 6pm) to say they can't help me and must reject my referral because I can't climb flights of steps. How can I trust they understand severe phobia if they can't understand inability to climb steps means I cannot climb flights of steps?? It was even mentioned in the initial consultation and they said not a problem.

I've looked online and they don't do treatment anywhere else. If you cannot manage steps you must go to South Wales which I cannot do.

I've emailed to say they need to ensure people know they're up flights of steps - they've a sign on their site saying they're disability friendly, well it's not very disability friendly to be up flights of steps is it??

Going to try and get some sleep now, but wanted to say thanks for the replies, it helps to know I'm not alone.

Get some sleep. It will help.

The system in many instances is broken. To see my consultant I have to have a GP referral, Even though it's the consultant that wants to see me.

GP admits it's ridiculous as does consultant but apparently it's 'The way it's done'.

It adds months waiting on and involves pointless phone calls with PA cancelling needless initial appointments that I don't need.

I'll try. Thankyou.

Op. I'm so angry for you. How dare your dental service behave in this way towards you.
If they say they can't help me and must reject my referral because I can't climb flights of steps then throw it right back at them and demand to know just HOW THEY are going to resolve this situation for you. They have caused it, they can fix it..

I've used the word 'demand' and am aware it's a forceful word, and it may be something you don't feel you can do right now, I know. But I would be shouting from the rooftops, and would be in touch with the local MP, the local newspapers and so on with regard to the unhealthy situation you have been left in, and asking if they can help at all.

Hope you sleep well my lovely. [big hug]

I've rung them, she when they said "multiple disabilities and complex needs" they didn't mean it was guaranteed accessible in my county. Those requiring accessible premises must travel to South Wales.

Ffs.

Who says their departments deal with complex disabilities and forgets to mention the only one here is up sodding stairs.

I began to get upset on the phone as they were insisting I must travel and they did tell the truth - I said about having severe phobia which has meant I've not slept due to panic about them lying about that as well and was called silly. I've serious issues with seeing dentists and calling me "silly" doesn't tell me your organisation takes it seriously.

I ended the call saying I needed to go somewhere, which I do, but it was more to stop me from ranting at them. So I'm ranting here instead!

I saw my GP and they ordered urgent blood tests and told me no one has a right to deny me care and the letter should be ignored for medical care as the dr isn't medically qualified. Unfortunately that's no use to me as people are using it.

I got a reply regarding the community dentist, they're willing to meet to discuss if I actually need any treatment (I do, I've not had any in over two decades and was told I needed an op). They deny lying about access as apparently I'd assumed that would be the case instead of checking - they may not have specifically stated accessible but telling someone a service is for complex multiple disabilities and needs, as far as I'm concerned, implies accessible - I don't think that's unreasonable.