Hello everyone, thank you for having me in the community! I am British and French, have always lived in France. Currently looking to move to the uk to spend more time with that side of the family and to join my partner.
I have endo and chronic pain. Do you have any advice on the sort of things I need to look for in a potential employer? Should I declare my condition? How easy is it to get certain arrangements around my work (work from home when I have pain, flexible hours, etc.). I love my field but I am now learning to put my health first and don't always know how or what/who to ask. I work in special education needs, so looking in charities, local government, universities, etc.
I also like mindfulness as it helps with chronic pain. Any online classes you could recommend? Or groups near Reading or Oxford?
Thank you very much!
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Purplefrenchie
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Endo is classed as a disability under the Equality Act 2010 but not automatically. So this means every case will be considered on its own merit as to whether you would qualify for 'reasonable adjustments'. I'm sure others who are actually receiving such adjustments will have more to add but this UNISON guidance is really useful.
Thank you so much for your reply! I don't really know the stage of my endo. I've been told it's quite severe when it was diagnosed but was a bit confused and didn't clock everything.. I have an appointment next week with the Dr to ask all of these questions and see what my options are. I'll have a look at that Unison doc, that is really helpful, thank you! So, just to be sure, is it up to me or to my GP to prove if I meet the right criterias of the Equality Act? Or is it up to a doctor appointed by the employer?
It would be up to you to prove it but I expect there would be evidence involved from your doctor. It's a complex issue as so much about endo is invisible - hopefully those actually claiming can advise better on the actual process they went through. It's about not discriminating against the disabled and the definition of a disability is broadly considered in the following stages:
1. Is there a physical or mental impairment?
2. Does the impairment have an effect on the member’s ability to carry out normal day-to-day activities? Is the effect substantial?
3. Is the substantial effect long-term?
Basically in making decisions it is considered how a tribunal would be likely to view it. Have a good read of the guidance to get a feel for it.
In terms of your endo be aware that in the UK there is a 2 tier system. Non-severe endo is treated in secondary care, so in normal gynaecology departments in hospitals by gynaecologists with a special interest in endo. Confirmed severe endo is treated in tertiary care in specialist endo centres. So it would be wise to plan ahead and get confirmation of exactly what stage/severity you have or had and what was done. If it was confirmed at a lap get a copy of the lap report and any other laps you have had with any colour photos and histology reports. If you were diagnosed by scans get copies of those reports. I don't know if you speak French and English but if so translating them shouldn't be too difficult but maybe you can request them to be translated. In the UK we are entitled to have copies of our records under our Data Protection Act 2018 and GDPR. The latter applies to Europe so I would assume you have the same rights.
Thank you so much for explaining everything. So far, what's visible is fairly local, but the severity of my pain makes doctors think there is a lot that is invisible. I have a tens machine to help me with this and been referred in France to specialist endo centres. As I've been having different and more pain recently, I'll ask for a new proper check up and will translate all the reports myself or with an official company. Once all of this is done, can I start with the unison doc, even before having a GP and an employer in the UK or would you advise me that I first settle, find a GP and a place to work and only then, to start proving my eligibility to the EqA?
It is your new employer that you will be proving your disability to so you can't start that as such until you are in work but I'd really study the UNISON guidance and make notes to be absolutely sure how you will then need to approach an employer. You can ask yourself the questions in the guidance and formulate what you would say as evidence.
When it comes to whether or not you need to advise a prospective employer this is a tricky one as I don't think you are obliged to unless they specifically ask if you have any health issues and I'm not sure they are allowed to do that. I would do a bit of googling to be sure of the answers to these sorts of questions and this Endo UK publication might be helpful:
Thank you again, that's incredible information. I'll study all the documents now before my next appointment in France as it'll also help me ask all the right questions. 🙏 So thank you very much for this as well. Once my stage and severity are established and I've translated the medical documents, could I go directly to a gynecologist or an endo centre or do I need to be referred to by a UK GP? And how long are the waiting lists (I'll be living between Oxford and London)?
Treatment and therefore referral for treatment, whatever the severity, is based on pain and/or infertility. Referral to a specialist centre would be based on you having ongoing pain and confirmation of a history of severe endo. So this can be confirmed severe endo known to exist at this point in time or a past history of being treated for severe endo with a recurrence of symptoms. If you 'qualify' on this basis then a GP can refer you directly on the NHS. Unfortunately post Covid the delays are substantial unfortunately - up to 12 months or beyond. There is a specialist endo centre in Oxford but under NHS Choices you can go to any one of your choice. As the NHS is a government funded system, as I expect you know, we can't self-refer. There are private specialist centres, some of which do allow self-referral, but costs of surgery for severe endo can be anything from around £10K.
I'm putting a link below to the NHS England treatment specification that refers to severe endo and there is a useful definition at the start. It also goes through the treatment path you would be in if you do have confirmed endo which falls within the definition.
hahaha very true! I think I'll also know more about the UK system than the French one 🙈 I'll have a good read, sort my appointments and will probably have more questions soon - hah! Thank you so much again!! 🙏💐
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