UK Benefits

[glittergirl08]

Hello all

I was wondering if anyone here had any knowledge or dealings with benefits regarding Lupus in the UK?

Any information would be appreciated! I do not have a clue where to start!

Many Thanks

:P

[carrie]

hi there
if you give me some more details i may be able to help
are you working now?family?diognosis?etc
how long sick?
:wave: :unsure: :unsure: :wave:

[glittergirl08]

Hi Carrie

I am 22 and have no children. Have been diagnosed for just over 1 year.

Am currently working full time but do not feel i can do it for much longer!

Cheers!



:wave:

[carrie]

everycase is done by its own merits. please dont give up your job until you get some answers. i was off sick so long that i was medically retired,i could then claim benefits immediatly.you may be able to carry on working part time and claim a disabled persons tax credit.phone 08456055858.for more info
also 0800882200 is a free line for any help and advice for disabled people.
it may be worth visiting your local citizens advice beurea but make sure who ever you talk to is well informed about benefits
:wave: :wave: :wave:

[Sannie]

Hi Glittergirl

Good to see you here!

If you feel unable to work, you must first ask your GP to sign you off sick.

There are several benefits available whether you are able to work full time or not and these help with your daily living expenses, care, mobility, rent, council tax, etc.

Do contact LUPUS UK as well as they should be able to offer you futher advise.

I suggest you make a call to the BENEFITS ENQUIRY LINE on 0800 88 22 00 like Carrie suggested!

We have some information in this forum so please do a search when you feel up to it.

Take care.

Love
Sannie

[Christine UK]

hello and nice to meet you.
there are indeed benefits out there,however having Lupus etc does not automatically entitle you to them.Its more of a question of how it affects you,The best thing is to ring the number sannie as given and they will be able to give you all the info u need

[annie40]

Hiya Glittzy

There's a lot I don't know about working part-time still and I need to find out myself, however, I can tell u about me, if this will help. I get DLA (Disability Living Allowance - High level Care and low level Mobility. It amounts to about ?300 per month but additionally it tops up my benefits, so that I am not on just ?50 per week when I am between work contracts or off sick. I get more like ?130 per week, which, with all my other benefits, rent, council tax, free prescriptions.... makes life quite manageable and I can can also pay for my gym and homeopathy, which help me. This kind of security is worth its weight in gold and in fact is a sheer life saver when you have health problems and if I ever lose it (asssessed every 3 years, when I nearly have a nervous breakdown!) I am dead!
Bear in mind I had a massive breakdown 3.5 years ago with severe physical factors also (wrong hospital???), hence the commencement of my DLA once I was capable of filling in a form!!! and when you fill in the forms (if you do), don't be shy. List all the help you need, whether you get that help or not. Fill it in over several days and bear your soul about 'all' of the difficulties you are having, even if they are emotionally based. Tell them practicalities as well as how you feel and just how difficult things are for you. You will need a supportive professional/doc. I think and a good friend who can vouch for your difficulties... can be a problem... who knows us and the intimacy/severity of our problems 'that' well???? as there is a section for them to complete too.
Good luck hun. and I hope knowing that you 'can' manage and that there 'is' support for you, plus some idea of figures will help to provide you with comfort and hope for a secure, safe future.
*Hugs*
annie40 (not diagnosed with Lupus 'yet') x
:luck: :wave: :wave: :luck:

[annie40]

Btw, please note glitzy hun., that I don't know about Lupus and DLA but as Chris says, the assessment is quite individual I believe and based on 'your' needs.
Another important factor to remember is that DLA is NOT income related, so you get it if you are working or not and it is a nice, 'stable' factor in the chaotic life of ill-health and self support. :flowers:
You can still apply for BOTH Income Support AND Incapacity Benefit at the same time as receiving DLA. Make sure you do if you are not able to earn!
You'll be ok. x

[annie40]

Oh my goodness, I am terrified of giving you any confusing information that may cause concern! In first posting of mine it is friend or relative (not just friend).......... get a form and check it out.
a x

[glittergirl08]

Hi!

Just wanted to say thanks for all your replies, i am going to phone that number this week. At least i have some knowledge behind me!

Thanks again

GG :D

[Sannie]

Hi Annie

I am very curious to know how you manage to claim the higher care component of the DLA.

Love
Sannie

[minnie1]

I echo your sentiments entirely. I was just about to add the same question.
I spent a long long time struggling to get low rate care and high rate mobility.

Annie I would suggest you be careful who you tell about the gym and the benefit, after all you are meant to be unable to cook a meal for one on low rate, let alone attend a gym.

[annie40]

The gym and my social life are very important factors in my health care programme and without my DLA I could not continue. I have had a 'very' hard struggle to regain any form of health and I am unable to take many medications. Exercise is a 'vital' part of my health care. 1) It aids the circulation of blood to my brain and 2) it combats depression. There are also other benefits I need not go into. When I first started exercising, it was all I could do in a day, to get dressed and get myself down to my local pool. I am very proud of my achievements. I have many problems, of which you are unaware. You do not know everything about me and do you mean to tell me that when you are 'not' in relapse, you are unable to exercise?
Yes, of course I can dance when I am well and in fact also, gently when I am not so well sometimes and not at other times. I danced for two hours on Sunday, very wildly and as I am still in relapse, I have paid the price today for not waiting, but then I am not perfect! There are many reasons why one would be unable to cook oneself a meal gals. I have found ways that work for me, to help me to survive. Like you, I am unique, with my own problems.
I can tell you that without my determination, I would now in fact be nothing more than a cabbage and a much more expensive burdenn on society. This determination was due to sheer desperation, as I am not strong, I have only a strong spirit. I was hanging onto my sanity by a thread due to immense stresses under the strain of which my brain shut down. This is a 'terrifying' experience. Do you understand any of this? Additionally I was at one time put on Zispin medication, which allergic reaction I have never recovered from. It slowed me down and ground me literally to a halt, shutting down my brain.
I live alone and I am very vulnerable. When I am working, I have a home help. Does this annoy you also? Again, I use my DLA wisely, for my care and health, to help me to lead as normal a life as possible. which after all, is what it is there for.
Other than my homeopathy, which I also pay for myself, I take several vitamins and supplements. I work hard to maintain my health and I am proud of this and I am very, very reliant on my DLA.
Please remember that I may not have Lupus in any case, I may have M.E. or I may just have very severe emotional problems for all we know??? During my breakdown I was unable to read, walk, process any thoughts at all and my speach was slurred and difficult. I could barely express myself at all, could not look after myself and I feel that I do not need to explain myself nor justify myself and 4 months in hospital to anyone but those that assist me with my health and care. I am still at risk and still in therapy!!! I am unable to take any stress (do not do so) and refuse to ever go back to the place I was in before. It is also very important to my health that I feel safe, otherwise, I will be very, very ill, emotionally, which of course, will additionally affect my physical health.
I am very interested to receive your answer to my question about exercise before I comment further......
Please remember, that there is still a lot more you don't know about me and also, perhaps there are things one can learn about health, with an open mind and a positive attitude, which is vital. We are all individuals.
Perhaps I am not just interested in myself, but the well being of others, enough to share fully and without shame.
tc and good luck to 'all'.
annie40 x

[annie40]

There is more to life (and people) than 'just' Lupus girls and I wasn't aware there was a competition????
Sorry, I know I can be a bit direct but I am also a student Counsellor and I insist on sharing and keeping it real.
Feel free to share yourselves and your feelings also.
a x

[Clare.T]

Here's a good site and you can download the forms also lots of links.

http://www.bhas.org.uk/physical_test.htm

All the best to Each and Everyone


Peace !
Clare

" Remember, people only have power over you if you let them "

[lupie lou]

Hello Annie

I am very happy for you, at least you seem to lead a virtual normal life, and have your future finances all wrapped up too.
I am a qualified counsellor hence the direct approach!!! I have done my training whilst in the social services mental health dept, a few yrs ago.
I would be interested to know how you cope with your illness and doing the degree in counselling because now I have SLE I cant even think straight let alone type and spell correctly at times and the course would be most difinately be out the question now.
You mention the gym. I agree with exercise and we all know our own limitations ect. I personally would not be able to go as with lots of girls I no with SLE.
But may I add that I find this topic of GYM ect, very upsetting, as most hospitals if needed would offer a hydro pool or physio of some discription if the GP thought it was necessary and would contribute to your overall health. The same goes for homeopathy. Why is'nt your GP organising that for you?
I know this as its been offered to me in the past!That way instead of paying you the money to spend on your luxury things ect the money it could go to some one who is in REAL need whether it be some one who has lupus or not!!!.
I receive high care and high mobility now not through choice,as I would rather be working if possible. I find the moneys a struggle as my husband is self employed, I also receieve incapacity benefit (long term) and because my husband is still working and has never claimed a penny from the government we feel penalized as we get no help as he is just above the boarder line for extra help!!!! We have 3 children a morgage ect. How I would love to be physically able and financially able to go to the GYM!!!!!
But am able to count my lucky stars that I have made wonderful friends on here. I will take the oppertunity to thank all the moderators for their help and especially Sannie for her genuine care and support to me over last few weeks :love: .
May I just add that the DLA forms are very confusing and I would sugest you find a advocat. They usually sit up at a hospital (mine did) and he fills them in all day and would act on your behalf!!!
Also I would photo copy each and every one you fill in and ask your GP to fill in the last page.

Lou

[Clare.T]

Just wondering.

Isn't this supposed to be about the effects of LUPUS and claiming benefit ?

Another point : It's not a good idea to give identifiable personal details on the web. General information is another thing.

Paranoid maybe, but better safe than sorry :)

We do not really know who anybody is. Maybe a participant here works for the benefits agency ?

Reading this as taxpayer , I recall the difficulties of an elderly housebound incapacitiated relative getting help. She had worked all her life had a pension and owned her own property.

I know it's not relevant and every case is different I am cetainly not in any position to judge nor do I want to and all that , but it sure makes one think.

I think it's odd that someone who doesn't have lupus should come to a lupus board and start telling people what they should they be doing to improve their lupus lives.

So many people struggle so much and don't need to be tactlessly dismissed and told to try harder and think positive.

Of course life isn't " Just " lupus ,whatever that's supposed to mean.


Clare

:blink:

[marybri]

Hi,

I have had to read through this thread several times and its been praying on my mind all day!!!

If you are able to live a fairly normal life you are very lucky!!!

I am not a qualified counsellor, only someone who has had lupus for 27 years hence the "DIRECT APPROACH""

There have been many times over the years when I wish I could have received some financial support!! but I was never able to qualify depite being desperately ill with 2 small children (my husband just walked out on me).

Because I had had so much time off sick my company made me redundant,and I had to fight with the powers that be to even get unemploymentbenefit.

I had to go and sign on every 2 weeks looking like something out of a horror movie and prove that I was actively looking for work.

I obviously live in the wrong part of the UK.

I was in danger of loosing my home which I had worked very hard for!! and barely had enough money to feed us--in fact very often I did'nt eat so the children could.

Anyway I am a VERY strong person and have coped with everything Lupus has thrown at me---including now defunct kidneys.

I consider myself very very lucky as now I have what I consider a very normal life. I can go to the Gym,have holidays etc.I also have a very caring husband who works very hard to try to make up for everything I went through before.

It should be understood that many of us here are more disabled and struggling to survive both physically and financially and I for one feel extemely upset that state benefits should be used to fund what I consider to be social activities.

To seemingly "brag" about this will only cause upset.

I don't post often and only do so when I feel I have something useful to contribute which may help others,so to be writing this at all rest assured it has upset me!!!

I fully endorse everythin Lou has said especially relating to Sannie,which despite everything she has to put up with and I mean with illness,not just trying to keep the boards in order,she always has time for everyone and is a very caring person.

I am proud to call her a friend.

May we all cope as best we can

Take care
Mary










[CODE]

[annie40]

Lou... * a thousand hugs *.
I am sorry if any of my messages have upset you in any way at all, really I am.
I can remember forcing myself back to work after my breakdown and sitting in front of the pc, with absolutely nothing going in. Please remember that I am not diagnosed with Lupus but I have had a big fight on my hands which determination has been all the more intense because I have had not one single person to rely on, which is rather scary when you are so very ill. I wasn't ready to give up, I was very frightened and I am not at all popular with medics. I would get home from work exhausted and 'drag' myself down the gym (that's when I didn't know what I was doing! lol).
Did you see the programme on TV the other night about 'health', what happened to some good clinic when the NHS took over and how things are going full circle back to care of the whole person, including exercise and social integration? It was very interesting.
I feel very sad to hear that you recognise the importance of exercise but feel too ill to engage and I really do send you one almighty, very special * hug *.
I am presuming that there are vast differences in the well being of Lupus sufferers. Is this due to untreated periods/lack of diagnosis and complications?
My GP doesn't believe in homeopathy and wont support the funding, even though the NHS have confirmed the funding is available. One is at one's GP's mercy and mine couldn't be bothered with me as I am not a heart transplant patient and therefore not in need apparently. They seem to have no concept of the state of my brain and its sensitivity to conventional meds. or anything else I try to convey. I have discovered that Homeopathy is in fact quite cheap @ about ?35 ever six weeks or so. It cures, so the cost is not even forever and I am 'much' more well than I was and having far less relapses. Perhaps that is why in fact I have such well periods??? (and can't wait for the arrival of the next one! lol).
I also take the following, if u r interested:
Multi Vit tab (no iron)
1000 mg of Vit C
A very high dose of Evening Primrose Oil
Low dose Asprin (that's new for me - the asprin that is).
Cod Liver Oil (there was a study some time ago that fish oil actually cures M.E. - my brother uncovered a report in The Times - posh lad).
Quercetin Complex (for allergies from Health Shop - new for me)
And like I say, if I am very desperate to keep going - Contac works really well!!! (But dont tell Sannie - she tells me off for that and I wouldn't do it if ur on other meds).
Homeopathy and Flower remedies.

Best way for cure.... Homeopathy, Flower Remedies, Counselling and a desire to be well, my Homeopath tells me and she's rather successful and very, very busy, bless her.

No-one understood my problems, no-one was caring for me and I simply had to find a way, for me. My Homeopath was my last hope (they usually are unfortunately).
I will be back at work again, on another contract as soon as I can, to top up my bank account. Wont bore you with the details but I lost all my profit from the last contract due to ACCOUNTEMPS lol, and it's going to court.
Perhaps I shouldn't have mentioned my finances, my mistake but I was just trying to help someone else to feel safer.
I have studied Person Centred Counselling only. I couldn't do a degree and tho I intended to, I doubt I will be able to do the Diploma (now incorporating 3 therapies) as I have just discovered that it's one full day per week, not one evening and of course, I have to work when I can. I need to look into all of this, to see if there is any way I can continue. Work and study is too much for me none stop but yes, I could manage one course if not working, with a view to my future security and independence. The idea was that I obtained a trade, to support myself and I have just lost my much needed direction now!!!
Lou, I am sorry things are tight financially for you and your family. Please remember that sometimes adjustments are needed, which choice is yours and you are empowered. You know all this hun. I am pleased you have your own house. I don't but I am safe (at the moment), my flat is nice and the area is nice. It's my home town and I love it. I was stuck in a bed-sit with a shared bathroom, in a strange town at one point during my separation, literally struggling to survive in every aspect and I am only too aware of how important decent housing is. I am frightened of unfamiliar surroundings myself! And I don't do stress at all!!!
I wish I could fix everything for everyone, I really do.
You have a lot of love around you Lou? and I get the impression you are safe? Relax and enjoy as best you can.
Sorry, I don't know your story, nor your problems, so if I have written anything to offend I apologise now.
I am merely sharing and answering your questions as best I can.
I would love to talk with you.
annie40
:luck: :flowers: :flowers: :luck:

[annie40]

If I won the lottery Lou, I'd help millions of mental health patients and in a completely unconventional way. They'd all be swimming etc., they'd all be achieving, they'd all feel safe and they'd all be feeling good about themselves, whoever they are and with whatever problems, if they so chose (and some don't).
I guess you know my feelings on mental health care then?
lol
xxxxxxxxxxxx

[Clare.T]

Lupus is a serious disease and can be life threatening !

Whatever complementary therapies are used, bach flowers and herbal medicines & vitamins *** will not stop the disease process*** No amount of positive thinking will stop your kidneys being damaged if that's what's going to happen.

People with lupus need to take the disease seriously and listen to those who know what they are talking about !

Clare

[Sannie]

Hi Annie

I do hope you get the help you so need.

Love
Sannie

[Dnabella]

Dear Everyone,

'THE MODERATORS HAVE DECIDED TO CLOSE THIS THREAD BEFORE IT CAUSES FURTHER UPSET TO MEMBERS'.

I hope that you will respect the choices and decisions we have made in regards to closing certain topics due to the amount of complaints we have gotten in regards to certain tone and content we feel its important to close topics if they begin to show signs of anger or misunderstanding.

Thank you
Donna