Did you know you can choose your consultant or hospital?

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  You can choose which hospital and consultant YOU want to see
  http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

  
  

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  Also PALS if you need to complain.. And remember to get your MP involved if your having trouble with Docs etc.
  
  http://www.pals.nhs.uk/cmsContentView.aspx?Itemid=944

  
  

So what can we do to ease the pain, when you have taken all your meds??

Here is a list from the Ukaagies:-

Hot bath or Cold shower

Volterol cream
Biofreeze
Pain patches... Ask your GP
Wax hand bath
IPod
Cuddles
Cold packs    

Wheat bags, hot water bottles

Electric blanket or heat pad
Lavender oil 
Watch your favourite Tv series on Box Set
TENS machine ... Can be purchased quite cheaply now from your local Chemist

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Transcutaneous electrical nerve stimulation (acronym TENS) is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes

Listen to music with your headphones on.
Playing games and reading... Try to distract your mind.
Meditation, relaxation, breathing
Pain Management course 

It's worth looking into a course .. Arthritis care do them, have a look at this link.

http://www.arthritiscare.org.uk/InyourArea

Or speak to your GP or Rhemuatologist to see if your local hospital are doing anything.

Hope you find something useful here

Going on holiday

Well its holiday season, so I thought I would add a few tips here for you to prepare for your great adventure.

If you are travelling in Europe, remember to get the European Health Insurance Card (EHIC).
 You can apply for this at Post Office's or On-Line. (Please see link below)

http://www.nhs.uk/chq/pages/1073.aspx?categoryid=68&subcategoryid=159


The card is valid for 5 years. And will cover you for any health problems whilst in Europe. 
YOU MUST KEEP THE CARD ON YOU AT ALL TIMES.
Meaning if you had a accident, and was taken to the hospital and you said you had the card, but not on your person, you would be treated but privately at a cost. 
But as long as you show them your card immediately , or it is found on you then you will get treated through the equivalent "NHS".


Medication

Your medication should be packed in your hand luggage. This way if your suitcase went missing, at least you would still have your vital meds with you. It is also good to take a few days extra meds with you, just incase you have a delay.


I usually pack mine in my pill reminder boxes. They do say you should take them in the  original boxes, but I find that to be too cumbersome. But what I also do, is take my repeat prescription with me. This then proves what I have been prescribed and the dosage. It is also quite good to have this with you, just incase you needed any top up meds whilst abroad.


Needles and Pins

If you have to take syringes or PENS injections with you. These must also be in your hand luggage, and you must tell them at Check-In that you have these with you.


You need to get a letter  from you GP, Consultant or Healthcare at Home that you are carrying these injections and then you should not have any problems.


I bought a Mini Porter from Healthcare at Home to transport my syringes, it is guaranteed to keep at fridge temperature for 18 hours. Again, this is good even if you have only a short flight, because you never know about delays. It cost me £20. I was told, that the cool packs that you can buy in shops, will not guarantee keeping your meds at the correct temperature. So I thought this was a reasonable investment.

Disposal

Instead on transporting your used syringes back to the UK, you can always take them to the local hospital/clinic or Pharmacy for disposal.

Here are some translations, which you could write down, if you cannot speak the language:-

Spanish - Por favor, podría disponer de mi jeringa médica

French -  S'il vous plaît pourriez-vous disposer de ma seringue médicale

German - Bitte nehmen Sie meine medizinische Spritze entsorgen

Italian - Potrebbe gentilmente smaltire la mia siringa medica

Portugese - Por favor, você poderia dispor do meu seringa médica

Polish - Proszę można pozbyć się mojego lekarza strzykawki

What can we get?

Ok.. So there are a few things we can get that will help us out.

First one, if you have 4 or more items on prescription over 3 months. The best thing to do is to purchase a Pre Paid Presciption Card. Click on this link for more information.


First of check whether you are entitled to Free Prescriptions. You can check by phoning 0845 850 1166
This is the number for help with Healthcare Cost. They will check if you are on a low income and if your entitled.

http://www.nhsbsa.nhs.uk/1127.aspx

Also, check whether your condition is exempt. If you have an autoimmune arthritis, your most likely not exempt. But if you have another condition, this might entitle you to free prescriptions.

Who is entitled to get free prescriptions in England?

• If you are aged 60 or over.
• If you are aged under 16.
• If you are aged 16, 17 or 18 and in full-time education.
• If you are pregnant, or have had a baby in the previous 12 months, and have an exemption certificate (see below).
• If you have a listed medical condition and have an exemption certificate (see below).
• If you are an NHS inpatient.
• If you (or your partner) gets one of the following:
  • Income Support.
  • Income-based Jobseeker's Allowance.
  • Income-related Employment and Support Allowance.
  • Pension Credit Guarantee Credit.
• If you are entitled to, or named on, a valid NHS tax credit exemption certificate.
• Some war pensioners - if treatment is connected with the pensionable disability.
• People on a low income who have a certificate HC2 (see below).

People who have certain medical conditions

Although there are many conditions requiring regular medication, only the following qualify for an exemption certificate:

• Treatment for cancer; note this includes treatment for the effects of cancer, or treatment for the effects of a current or previous cancer treatment.
• A permanent fistula requiring dressing.
• Forms of hypoadrenalism such as Addison's disease.
• Diabetes insipidus and other forms of hypopituitarism.
• Diabetes mellitus except where treatment is by diet alone.
• Hypoparathyroidism.
• Myxoedema (underactive thyroid) or other conditions where thyroid hormone replacement is necessary.
• Myasthenia gravis.
• Epilepsy requiring continuous anticonvulsive medication.
• A continuing physical disability which means you cannot go out without help from another person.

http://www.patient.co.uk/health/Free-or-Reduced-Cost-Prescriptions.htm

Another good purchase is the Free Cinema Card. This costs £5.50 valid for one year and allows someone to accompany you to the cinema for free. Worth every penny.


Here is the link:-

http://www.ceacard.co.uk/

Are you registered disabled and drive?
Are you receiving :-

• higher rate of the mobility component of Disability Living Allowance
• War Pensioners Mobility Supplement

Did you know you can get disabled taxation class road tax?

http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/Yourvehicleandlicence/DG_10028003

Here is a link for how to apply for a Blue badge

http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/Bluebadgescheme/DG_181208

and also a link for applying for Disability Living Allowance. DLA

http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Disabledpeople/DG_10018702


Hope some of this helps some of you

Your first Rheumatologists appointment

What to expect and what to take:-

• Take a list of all the medications you are currently taking and the dosage and frequency (including supplements and herbs)
• Have a list of all the areas on your body which are troubling you.
• Take a note of how long the stiffness lasts in the morning
• Tell them if you are suffering from fatigue 
• Usually you also need to take a urine sample
• Do you remember when you first noticed your symptoms?
• Sometimes it might be good to show any photos you may have taken of swellings etc, especially if those areas are not swollen now
• Think of how to explain how you feel.. i.e. What sort of pains? Does it ache? Is it sharp stabbing pain? Does it feel like toothache in your joints? Or brain freeze in your joints? Do you muscles and tendon hurt? Do you feel like your bones have been replaced with razor blades or knives? 

Questions to ask:-

• What type of arthritis do you suspect I might have?
• When should I expect to notice an improvement after I start the treatment?
• How long would you wait to know whether the treatment is working or not?
• If this treatment plan does not work, what would be my next option?
• How will you monitor my progress or the possibility of adverse effects?
• Is there anything that I should look out for or be aware of? 
• Will I need to have regular blood tests and how often? Will it be at the hospital or at my GP surgery?
• What else should I consider to help manage my autoimmune arthritis ? (I.e physiotherapy, exercise and joint protection)
• Will I always be on medication? 
• Is there any possibility of joint damage while I am waiting for the medication to start working?
• If I have any problems or questions is there a telephone number for me to call someone at the clinic?
• Is there anything I should not do?

Work

I have been able to work for the majority of my life since diagnosis, with only long periods of sickness for operations and major flares. However, I am now on long term sick leave from work. Im lucky, my company have been very good, but at the beginning a few issues were raised. Its best to be prepared with your rights. If your registered "disabled" then you have more weight on your side to assist you in work or even to assist you giving up work. Do not look at being registered "disabled" as a tag, look at it as a benefit to help you carry on with a quality of life.

The definition of ‘disability’ under the Equality Act 2010

In the Act, a person has a disability if:

• they have a physical or mental impairment
• the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities

For the purposes of the Act, these words have the following meanings:

• 'substantial' means more than minor or trivial
• 'long-term' means that the effect of the impairment has lasted or is likely to last for at least twelve months (there are special rules covering recurring or fluctuating conditions)
• 'normal day-to-day activities' include everyday things like eating, washing, walking and going shopping

People who have had a disability in the past that meets this definition are also protected by the Act.

To get registered you can either apply to your local council or claim Disability Living Allowance. Speak to your GP if in doubt.


Here is a link to the NHS website:-

http://www.nhs.uk/chq/pages/2571.aspx?categoryid=155&subcategoryid=155

Now your Employers have to make reasonable adjustments to help you stay in work. So be armed with as much information as you can.


These are some good websites that will support or give advise:-

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/SupportWhileInWork/index.htm

http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068

http://www.equalityhumanrights.com/

http://www.arthritiscare.org.uk/LivingwithArthritis/Workingwitharthritis

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/employment_benefits/default.aspx

I also found this forum really helpful.. You can post your problem and someone will come back to you with specific advise.

http://www.ukbusinessforums.co.uk/forums/showthread.php?t=207565

Above all .. Don't give up

Methotrexate

http://www.patient.co.uk/medicine/Methotrexate.htm

Now people can have a love / hate relationship with Methotrexate (MTX). I was on it for years, since 1999, but I suffered badly with the side effects. Originally when taking the tablets I had very bad diarrhoea. So I switched to the injections. The injections then by-pass your stomach so should improve some of the side effects. It definitely helped with the diarrhoea but I then had really bad nausea and fatigue. I stuck with it for about 8-10 years. But then have recently changed to an ANTI TNF.

When I was taking MTX I wasn't on any support groups and had only spoken to my GP or Rheumatologist about the effects. If I'd known these tips then, I might of had a different experience. That said it really did help with my PsA and my Psoriasis.

So this is a list of TIPS which the UKAAG support group have come up with:-

Methotrexate tips to combat fatigue and nausea - Created by the Ukaagie group

1) Colpermine (slow release peppermint oil) or just natural peppermint oil from health food shops

2) Eat little and often - salty snacks are good (olives/seeds/crisps)

3) Drink plenty of fluid - lots of water throughout the day. Melons and ice lollys are a good way of getting fluids

4) Sucking aniseed sweets or mints helps with the nausea a bit

5) The anti sickness travel wrist bands are suppose to help with Chemotherapy nausea.

6) Power nap 20/30 mins. Set your alarm on your mobile phone. Rest as much as you can for the first 48 hours 

7) Anti sickness pills - metoclopramide, doneperidone

8) Eat a good hearty meal before taking the tablets- Carbs - eat three small meals of say toast, sandwich and chicken burger on a bun on following days.

9) Folic acid essential on other six days, not MTX day. 

10) Opramazole or Lanzoprazole might be a help, (take for the side effects of Anti inflammatories)

11) Proper ginger has good anti-sickness properties. Or Ginger tablets from health food shops

12) You can not get coated mtx tablets :-( Try taking with thick fruit smoothies, pushed in to ice cream etc. Iced stuff works particulary well.

13) Work on your "attitude". The nausea can start before taking  the MTX and straight afterwards 

14) Time your meds so you sleep through some of the worst time. Try to take just before you go to bed.

15) Test splitting your dose over 2 days rather than taking all in one day. But first consult with your rheumatologist if this is ok.

If you do suffer any of the side effect, speak to your GP or Rheumatologist. DO NOT suffer in silence. This drug is suppose to give you back some quality of life, so don't let it take any more away from you.

There are lots more medications they can try. So this is not the end of the line

Good Luck