Just thought I would write down what I have done so far to launch an appeal for the IVF treatment we qualify for. Not for one minute do I think this is comprehensive or a guideline. I hoped it might save a little time for anyone else who is sadly in the same position. I will update the thread if we are successful. Stressful enough let alone having to fight the NHS.
What we should be entitled to:
PCT govern what GPs and hospitals do in each particular area, in terms of funding and prescribing etc. Head of the PCT is the Chief Executive.
The National Institute for Clinical Excellence (NICE) are a government body which make recommendations on what treatments/medications should be available and funded by the NHS.
Criteria for Scotland and Wales may be different as local NHS arrangements are vary.
NICE recommend For IVF if you have a BMI between 19-30 and are aged 23-39, some restrictions are made on smokers and couples with existing children you should be offered up to three cycles of stimulated IVF.
Some authorities also state if you have had private IVF treatment that may have preclude you from funding. Not sure if this is enforceable but good idea to check as it may alter your strategy
Link to show how infertility testing and treatment should proceed according to NICE: http://www.nice.org.uk/nicemedia/pdf/CG011algorithm.pdf
Each Primary Healthcare Trust (PCT) carry out these recommendations and make sure treatments etc are available.
What is currently happening (post code lottery)
Practically about t2/3rds of health authorities offer one cycle but some restrict the age range further than guidelines etc or do not offer IVF. The postcode lottery indeed!!!
Link to provision of IVF in 2007 most recent report for all PCTs
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085665
It is a good time to appeal as Dawn Primarolo has been pushing the idea that IVF provision should meet NICE guidelines country wide: Two newspaper articles below.
http://www.timesonline.co.uk/tol/life_and_style/health/article5769066.ece
http://www.timesonline.co.uk/tol/life_and_style/health/article4583272.ece
Letter from Dawn Primarolo to PCTs
http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/DH_087134
Process of my appeal so far
If have been referred for IVF and meet the guidelines but have been denied treatment by my PCT. I do everything in writing so much less stressful than the phone and you have evidence of everything from then on’
If you are not sure who your PCT is http://www.pctdirectory.com/
Google your PCT website and look on the about us tab (or similar) should be a list of board members and contact details. Look for the chief executive
I have written a letter to the Chief Executive of my PCT setting out ….
why we qualify for IVF briefly not too much medical detail just that we have been referred due to documented medical conditions
the date we commenced testing for infertility
duration of infertility
stating the we meet NICE guidelines for BMI, age, non smoking & no existing children
Incorporating the phrase that the PCT operates a postcode lottery for treatment.
Asking that we will be provided with the IVF cycle which we qualify for and if the PCT cannot provide this would they provide a written reply containing their final decision in this matter. Adding that this will release you to take your complaint to the Healthcare Ombudsman and your MP.
Follow up the letter if you haven’t heard within 10 working days as they are required to acknowledge your letter and make a plan to answer your complaint.
It is the ombudsman that will handle the complaint from here on if your PCT deny you treatment but we are not yet at that stage.
Writing to you MP cannot harm your case http://findyourmp.parliament.uk/commons/l/
Mine will be passing on the information that I get to the Health Minister.
Other useful things:
The freedom of information act 2000, allows us to obtain data etc from the PCT.
I sent the following email to my PCT. They have to provide you the data within 20 working days or be in breech of the act.
Dear Sir / Madam
Under the auspices of the Freedom of Information act I would like to request information regarding NHS funded IVF treatment in xx PCT
Can you give the criteria for NHS funding in xx PCT which are/were applied in 2007, 2008 and 2009 particularly with respect to age. Can you also indicate whether these criteria are in line with NICE guidelines.
How many female patients were treated by NHS funded IVF within xx PCT in 2007, 2008 and 2009 and what was the age range of the female partner treated ie maximum and minimum age treated
How many female patients within xx PCT are currently (April 2009) awaiting treatment at xx Hospital for NHS funded IVF? How long is the waiting list ie if a patient was currently referred how long would it take to receive NHS funded treatment?
Is the waiting list for NHS funded IVF within xx PCT subject to the governments waiting list initiative?
I understand you will be able to provide this information within 20 working days of my request.
Kind regards etc
Useful to find out what is actually happening in your area
Type FOI or freedom of information act into the search section of your PCT/hospital web page to find contact details or email address for that department.
Advocacy service
These people are helping us with our appeal and our advocate is brilliant. It is a free service so I guess it may vary across the country but has been massively worthwhile for us
http://www.pohwer.net/
PALS
Are the patient liason service within each PCT and they should help you with complaints but so far ours haven’t answered my letters or emails. I guess the service varies
NIAC
Great information
GOOD LUCK post a thread if you think I can help. Or just want a moan.
JJ
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[Modified by: J-Jenko on 27 April 2009 13:25:37 ]
[Modified by: J-Jenko on 27 April 2009 15:26:56 ]
