NHS - long term support/Are treatments intensive enough???

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NHS - long term support/Are treatments intensive enough???

Postby sjc » Sun Apr 24, 2016 10:50 pm

Hi all,

Not been on here for a very long time? How are you all, despite the FM and life issues? Me still suffering with FM as always and having to shove a hot water bottle on my back - its that pain that feels tight and knawing.

Anway, I probadly asked this before...but cannot remember as it's been a long time - but do you feel that the NHS provide long enough community and NHS treatments. And do you feel that you medical support/treatments are long enough for someone with FM.

Personally, I feel that at the moment, and from my personal experience, I have only received very very basic physio/consultant/advice on the NHS, and it has not been long enough to say that most people with FM have it long term.

And as you know, some ppl with FM have it really severe to the point where they are bed bound or have to stop work, etc...and personally I don't feel that "some" doctors and therapies provide adequate support.

I don't want to bitch about the NHS, and I know some people may only want short term/basic support and it suits them - I know everyone is different, but personally in my experience, I don't feel that FM get the recognition medically, and it baffles me.

What do you guys think? I know that the NHS are abit tight on money, and struggling for cash - so I appreciate it is not easy for the NHS...but I just wondered what you guys think on how the NHS overall treats FM patients, and what would you like the NHS to treat you?

If you had control, how would you like to be supported - it could be anything, from better or quicker diagnosis, better medication options, better advice, longer GP appointments, your own personal health budgets to spend on your choice of therapies, etc?

Sorry to sound clinical here, but just want to know what would make a difference to you....

Love to hear your thoughts on how long should therapies be? If you could get any therapy on the NHS what would it be? How long do you think you should have your therapy or specialist on the NHS, if it was paid by the NHS? How intensive should therapies be each week?

Take care folks, and hope you are all OK...

:-D :-D :-D :-D :-D :-D
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sjc
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Re: NHS - long term support/Are treatments intensive enough?

Postby *Lisa* » Mon Apr 25, 2016 1:01 pm

:wave:

As you maybe aware everyones treatment can differ so some are OK just to take medication/medication combinations as they cannot tolerate hands on therepies or do not wish to do any talking therapies BUT there is a high majority that like you and me need/want NHS long term support in the way of therapies.

I for one need physio. I have always responded to hands on treatment since the begining and i am highly sensitive to medications which limit my options.

I pay for this myself, have done for 15 years! because "Quote" The NHS cannot afford illnesses they cannot cure! I have been told this by various NHS staff along the years but funnily enough when i contacted my local MP in regards to this as my arguement was (in light of the knew ESA back a few years) that if you cannot treat me i'll never be able to return to work. I can only afford one treatment a month. Now with my stiffness and joint restrictions i need weekly treatment. My MP is one of the big lads in the conservative party and he was unaware that i could not have treatment! so the government tells the sick & disabled to go to work yet have no clue they cannot as there not getting the treatment to be able to!...

This is where the PIP comes into play. Need PIP to be able to afford treatments yet with its strict points system a very few limited people are now getting through or getting through but not getting enough to be able to treat themselves and with the rest of the moneys needed to help illnesses etc.

I also need alot of mental health support for my anxiety as this in turn excasabates my pain & stiffness. Im currently doing CBT BUT this is restricted to 8 sessions now and if you miss a slot by no fault of your own thats tuff now! they srike that one off :shock: not good when like me you spend half the week unable to get out.

Do believe in post code lottery. Unforntunatly even tho i live in a big county there is little support and so were left to fend for ourselves. Medications are OK but anything is you pay for.

The NHS adopt the healthy diet/exercise lifestyle to help FM yet any light exercise groups i have looked into are very costly and we all know you need to maintain this for life. Again needing PIP....

ALSO i found a group that does light exercise for people with limited restrictions BUT had an age limit of 50plus! :shock: :roll: :-?

They say to limit stress and to relax the body yet all therepies that aid this are very costly and again we need it for life not for a period of time.

Where i live you get told to take ya meds and do exercise and maybe a few sessions of physio that teaches you stretching exercises but when your whole body is stiff i'll be there all day stretching each one eh! :lol: and the problem with no one helping you with this stratagy is that if you overdo the stretching it makes symptoms worse! there not all easy to achieve alone!

So NO i believe not enough help & support

I also understand that NHS have limited funds and its not there fault, they dont get enough money to be able to fund all departments and something has to give. The governemnt seem to be unaware in what NHS use for funds and where it goes.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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