Hi, this is my first message so apologies if this question has been asked before.
I have several physical and Mental health issues classed as ‘complex case’.
My main problem is that trying to get help and treatment for myself is a complete nightmare, frustrating and often unsuccessful.
If I want help for my physical problems (autoimmune conditions, sjogren's syndrome menieres-disease etc) the ‘Physical Health camp’ decide they can’t get funding due to my ‘mental health issues’ and of course vice versa. I therefore just stay in this cycle of being referred and turned down accomplishing nothing but frustration and worsening of my conditions.
I suppose to sum up has anybody managed to find a solution to this or advise how to get the help I need. I used to have a very GP who was very at resolving this but as most good doctors had major burn out and retired.
Apologies in advance if appears rambling Im not well at the mo and trying to get help.
18 Replies
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Hello & Welcome
I am not quite in the same boat as you when it comes to physical / Mental Health problems but I am definitely in the same boat where I come under " Complex " regarding my Mental Health as I am agoraphobic so cannot get to the help and they do not have the resources to come to me , so I get left with nothing !
BUT , do not give in as it is wrong , just because someone maybe " Complex " as they call it does not mean they should not get the help they need !!!
I finally have someone coming out this week , after searching for years , I am afraid of holding my hopes up that they don't walk away saying I am to " Complex " ( starting to hate that word by the way ) but fingers crossed
Now you had one good Doctor which I am sorry has now retired and the rest are not as helpful but could you maybe speak to another one and explain somehow the Doctor that retired managed to get the help you need , could they not do the same ?
Failing that , if you are in the UK , I hope you have a good local MP , we do
I have contacted them over several things and they have really helped me , this would be something you could do , put an email together or if you can find out they usually have one day a week when you can make an appointment to see them and like I said if they are good ( which usually they are ) they will look into what is happening
I always think after years of what I feel been rejected because of that " Complex " word that anything is worth a go , what have you to loose , but who knows you could gain
Good Luck
Take Care x
• in reply to
Hi , i suffer too with agrophobia which is one major hurdle trying to get any qualified person to visit me, (i alway’s ask them, if I was bedbound for a physical problem what would they do? Of course never gets answered) also get told by the specialist secretary ‘I am putting my health at risk if I don’t attend’ which I respond then it’s important they make an arrangement for a home visit, the response was a letter of discharge. Last year I spent time in hospital due to peritonitis and it was really traumatic to say the least.
I haven’t thought about involving my MP - thanks for that idea. I have a home visit from a health coach this Tuesday - they are linked to the GP surgery who liaise with the doctors about problems I feel need help with. I am putting together an ‘agenda’ about points I need to discuss (poor memory and likelihood to blubber and lose focus) and will then ask them to email what we discussed (poor memory again! but also so there is a paper trail)
Thanks for your kind words and encouragement. I will never give up, I have 2 little ‘dogs’ who need my love and attention (hence Crazydog) 😜
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I understand I get so frustrated and feel I am left because I have agoraphobia which is a Mental Health illness and should not get in the way of us getting help !
It is a good idea to write down the points you want to put across , I do this all the time !
See how this meeting goes and if you don't get anywhere then I would email your MP , mine was shocked when he heard my story and he got onto the case straight away and was most helpful , I hope the same would be for you
O two little dogs how lovely , and yes they do need you so stay strong , the help will come it is not fair we have to fight for it but don't give in till you get what you deserve , you are just as important as anyone else , never forget that x
• in reply to
Thanks lulu x
I don’t have a lot of support from my family but kkeep in contact with my Mum (quite strained) and brother. We have called this project ‘Fixit for Rach’.
I have a very dry and wicked sense of humour which tends to get quirker the more unwell I get.
I have always said if I ever lose my sense of humour I know I’m beaten .
• in reply to
You sound like me , I have suffered years but always kept my sense of humour and the same if I loose that well ....
You have these Communities as well now and I know you will make friends and always have someone to talk to so you are not alone x
Are you in the USA
BOB
• in reply to
Hi Bob, No I live in the UK thanks for resoonding
• in reply to
Hello and welcome to this site.
I am a bit concerned you are requesting home visits from those Specialists who have the probability of controlling your extensive health conditions. I life out in the countryside and I have to visit the GP Surgery to discuss my conditions and if I am lucky my Specialists visit a Cottage Hospital fifty miles from the main general hospitals. The only services that visit me at home can be down to Pensioners Services NHS.
However eventually we do need to visit another Hospital in a Market town 30 miles away. If I need treatment, the town near where I live has only one Ambulance, also a Paramedic car located at one of our Surgeries so they have to put a c ar on and pick me up and bring me back. these journeys are upwards of 45 miles, 95 miles in all.
Sometimes nurses attached to a different Departments in hospital visit our Surgery to give treatment. Our CPN do visit although Therapy CBT I need to travel about ten miles away.
I have a rare Arthritis condition, Congenital Short Term Memory problem and problems with my blood pressure where I can be affected by changes in temperature or standing up. I am also 69 years old.
Can you not arrange for a person to take you to hospital, or even drive or use public transport to get you where you want to be. Your GP Surgery may have Specialists visiting Surgery or similar.
Yes please do not shoot the messenger, if you are really bad with Chronic Disability they may put on an ambulance bus to pick you up and bring you back, however you will be sitting around waiting to be picked up before and after treatment.
All I can suggest is to talk with all Specialists and see what can be arranged. If your problems are linked to your Depression and mostly Anxiety, you may have problems. Sorry, this is how the system works
BOB
• in reply to
Hi thanks for your reply. I suffer extreme agoraphobia stemming mainly from my physical problems (menieres-disease, arthritis) and at the moment do not get pass my garden gate. I have asked for help to treat agoraphobia but my Psychiatrist was one that said they could not get funding for therapy as I also have physical disabilities too. I am aware specialists very rarely do home visits and asked just out of curiosity and to try and get them to understand the lack in the system and detriment it can cause to individuals who are ‘unable’ to leave the home.
I have also approached several charities but seem not to meet their critera - as I said.
On a positive note I have a home visit from a health coach linked to the GP this Tuesday and hopefully can get them to understand my situation and refer me to agencies that can at least advice or provide help as I know I am not an isolated case.
• in reply to
I cannot understand if you have had your Physical conditions confirmed and diagnosed there is no reason why you cannot have further Specialists to help you. Most disabled do have additional problems. So refusing treatment because of Mental Health sounds wrong. However if you have Anxiety it may be they feel your other conditions are part caused by your Anxiety.
I have four Congenital/ Chronic conditions with my memory concern and associated Depression. They are just confirming the condition I have suffered since a ten year old child. I am not having any treatment for my Mental Health although I just need to pick up the phone and will be put back on the waiting list.
You need to talk to your GP if you cannot get treatment for Arthritis etc
BOB
• in reply to
Yes I understand what you say, I also have quite a few physical health problems mainly autoimmune problems which I believe has caused a lot of my mental health issues but also get worse when my mental health is poor just one fuels the other but no professional body wants to treat me as they just past the buck. This has happened basically since I was 9 years old and I am now 50. I feel it is time for me to stop keep ‘dropping through the net and get the help and treatment for me now rather than when I am in crisis (either physical or mental) just being patched up and let to the next time. I want to find a balance between being totally obsessed and fixated on this issue and general living (stuck with me trawling the internet and having time for my few friends and of course looking after my dogs)
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Just out of interest as you reply memory problems I have been reading about Severely Deficient Autobiographical Memory, which I was trying to explain to mum how I have no recollect of my childhood or even what I did yesterday a lot of the time. Interesting reading I have completed the questionnaire. My mum has a condition called ‘face blindness’. I also suffer from POTS which has only occured last 3 years but can be very debilitating and caused increase in my general anxiety also when I started having menieres-disease this created a whole lifestyle change and heightened the agrophobia problems.
• in reply to
The tests for memory problems can take up to five weeks, are what tests have you had ??
My condition is an autoimmune concern, also genetic, it is very important your GP effects tests. If they feel your conditions are Anxiety induced they will not want to.
How do you know you have these concerns ? Reading about them does not say you have them. l would strongly advise you discuss all with your GP.
When I was young we would have a medical dictionary in the home and when we read the thing we would see the illness we had would lead us onto a more serious condition. All down to Anxiety.
It would seem they feel you are not suffering the illnesses mentioned, it is all down to Anxiety that may be why they are not giving you the tests you are asking for.
Is your Doctor treating your Arthritis ? Have you been to see a Specialist regarding this. I am nearly seventy and I am going through withdrawal of Opiate medications because of age. They have me on B12 Injections and D3 vits and they are helping me with my pain. Something to try ?.
BOB
• in reply to
All my conditions have been diagnosed by specialists and have medication for them. I rarely use Dr Google and the SDAM i was referring to was an article I read on an Arthritis site I subscribe to. I suffer generalised anxiety which I and expect a lot of people with autoimmune problems have to different extremes. When the agoraphobia was less. I managed to attend appointments so it is only the last 2 years I have found it difficult to continual seeing my specialists who due to my lack of attendance have discharged me so ‘they can take on another patient’. My conditions are managed by arranging phone consults with a GP if I have any issues. I.e flare of inflammation, medication problems so I input from a medical doctor. I think my need is to be able to have active treatment to improve my health but am unable to as the varies bodies can’t agree where the funding will come from and due to the numerous problem I have; which condition should have priority.
When Im asked I tell them treatment for agoraphobia, if I got help with this I could attend my appointments BUT they won’t as it comes from Mental Health Partnership was which isn’t linked to NHS budget.
Mental Health won’t fund as I have physical health limitations they feel would mean I not a good ‘candidate to receive funding’ to pay for the course of therapy. Therefore leaves me stranded between 2 ‘parties’ passing the buck
• in reply to
My Arthritis is treated with Cox 2 Inhibitors, Tramadol and Amytryptalene for the nerve damage. They are reducing my Opiates and have put me on B12 injections every twelve weeks and D3 Tablets twice a day, they are designed for Pensioners. My body is unable to produce B12 and I have problems with not receiving not enough D3 in my body., so my arthritis, PsA seems to be not as bad now. Taking my Statins etc and my AD Drugs for Associated Depression. My neck joints are fused and that causes the blood problems to slow down to the brain, so I become dizzy when I go out in the cold or rise up from sitting. The Opiates, been on them now for thirty years, and I have not worked since 1988, I am now sixty nine.
Remember if there is a need to treat they should refer you however if you fail appointments, two they will normally send you a letter or phone call from your GP and your Surgery will possibly move you out of the practice, the same can happen in hospitals
BOB
• in reply to
Hi Bob
I was diagnoses with PsA 2 years ago when I was 6 years old had Still’s Disease which ‘burnt out’ when I was 21 but inflammatory Arthritis reared itks ugly head when I was 30 and have had varying dianosis of what ‘box’ to put it on (I think as many as the different specialists I’ve seen. I believe the label PsA arthritis was decided because I told them my Mum suffered with Psoriasis
• in reply to
I take Sulfasalazine although had methotrexate and anti TNF but had liver issues with both. I also have Polycystic liver disease which caused a hospital admission for peritonitis last April
Saw the health coach today i sent them an ‘agenda’ so they could discuss with a GP prior to my visit of points I wanted to bring up.
I thnk the meeting went really well and made them understand my problems but also that i am willing to achieve solutions even if it meant I had to come out my comfort zone as long as I had support to deal with the feelings and emotions arising from that
So all in all positive stuff.
I made up a WANTED poster with my pic stating my crimes were ‘being a pain in the bum’ and ‘Extra Work’ and ‘please distribute and can be used for target practice’ - just a bit of my sense of humour - Im sure they will be well used on punchbags over the next month though😁
Sorry if I appear ignorant Bob, but can’t remember if you live in the Uk ?
Anyway have a good evening, probably write again tomorrow
• in reply to
Is your skin clear,
I have been using Goat Milk and Honey Soap it seems to keep the skin moist
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