I need a bit more help on my quest with Boots opticians and the awful way they treated my mum.
I have now received their report and it states that they knew about my mum's MD as far back as 2010 but not once did they mention it to her. So my question to you all is, did they have a right to keep my mum in the dark or did they have some sort of obligation to tell my mum she had MD. Surely a patient has the right to know that her sight will be severely impaired in later years?
They are also stating that at her last appt,, which was on the 26th October, her eyes tested as 6/12 in the left and 6/10 in right but when she went to the hosp on the 1st Dec (5 weeks later) her readings were count ringers in the left and 6/18 in the right. So my second question is, could my mums eyes have deteriorated so quickly in less than 5 weeks?
They have also stated in the report that my mum refused a referral to the hospital, which I am disputing seeing as she was waiting for the postman every day for the letter to arrive, and I know from my own experience that when I refused to be sent to the hosp for high pressure readings behind my eyes I was made to sign something to say I had refused so should I be asking to see signed proof to back this statement up?
I am due to have a telephone conversation with Boots on Thursday next week to discuss the above so any help or advise you guys can provide would be much appreciated.
Thanks
Moggie x
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Moggie
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Unfortunately, it has been going on for years that opticians did not mentions dry AMD to patients even though they surely must have been aware of it. In my own case, since dry AMD usually progresses very slowly, I must have had it for years in both eyes, but it was never mentioned to me until 2016 despite my yearly eye tests. And even then I was not referred because they said I needed no treatment yet. By the way this was not at Boots. And yes, I agree with you, we should be told and yes it can very quickly change from dry to wet within weeks, as I found out, but it must already be fairly advanced by that time.
I hope you get satisfactory answers from Boots.
May I ask why you refuse to go to the eye clinic? Is that wise?
Sorry for the delay in replying to your newer post but wanted to say that I did reply to your question as to why I refused a referral but it does not seem to have appeared.
Since I have been in my late teens (I am now 58) I have had numerous high pressure readings in my eyes but every time I have got to the hosp these have been normal so when, yet gain, the reading was high I refused to sit down my local hosp for hours again. The local hosp have now got so fed up with optician sending people to them over this matter that they now ask you to go to another opticians and have another pressure check done before they see you as they have found that opticians equipment is not reliable and, according to the hosp, Boots are one of the worst offenders.
I haven't got a clue where my first reply went but sorry if you thought \i hadn't answered you.
Thanks, Moggie. Your explanation makes sense. Besides, we are not obliged to answer questions if we rather not. It is understandable and not so important. You have more pressing things to think about. Actually, It has happened to me too that one of my posts went astray.
My mum was never diagnosed with wet, she only had dry so my questions was can the dry version of this illness change so rapidly within 5 weeks.
My mum passed away last year as, being almost blind as well as profoundly deaf was just too much for her and 3 months after she was diagnosed with MD she just gave up the will to live.
My argument with Boots is not just about her MD but they way she was treated as a deaf person as, because they could not get her to understand them due to her lack of hearing the referral they wanted to send her for (they told me the referral was for cataracts) never happened. They did not write to her GP, nor did they send any letters to alert family member of her need for a hosp referral.
Very difficult for you- I think the lack of social support for people now comes into this. In the past your mum would have had more help with being deaf - needed because these misunderstandings are bound to arise .
May I just add, Moggie, that dry AMD too may cause loss of central vision in the long run, except that it usually takes longer to reach that stage. About 85% of people with dry AMD never develop the wet form, but that doesn't mean that some of the them do not lose their central vision. There is no treatment for the dry stage, but had your mum been told sooner rather than later, she might have tried some recommended supplements and special diets, which may or may not have helped. As rosyG already said, some signs of dry AMD is quite common as we get older. How fast it progresses varies from person to person. She certainly should have been treated with more care and compassion in view of her blindness and deafness so that misunderstandings would have been avoided. The trouble with opticians is, they are running a business, but that should not detract from giving good patient care. I am with you all the way and I hope you get your answers so that at long last you can put your mind at rest. You deserve the respite from worries. I remember from your posts of the past how hard you tried to do what was right for your mum. So, please remember, you have nothing to reproach yourself for.
Thank you for your lovely, and helpful, answer. So what you are saying is that it is possible for my mum to have gone from being able to see fairly well to almost blind with the dry version of MD in 5 weeks???? I find that frightening that they had detected this 6 years before but gave her no option to plan for the future.
Yes, indeed, Moggie, the change can happen almost over night, so to speak. She clearly had the dry AMD for years and the deterioration of her sight would have happened quite gradually so that she was not too much aware of it, as the brain tries to adapt to different conditions. I found that for many years running, each year I needed stronger glasses, and I just put it down to the aging process. Only when I was told of my "dry" AMD by the optician did I put two and two together. The optician had told me to come back in another year, but I asked my GP for a referral to the eye clinic and when I got my first appointment with the ophalmologist 6 weeks later I was diagnosed with wet in one eye with a massive swelling, which begs the question, was my condition already worse than the optician stated 6 weeks earlier? I shall never know.
One more point, Moggie, there conditions other than AMD, when a massive bleed occurs that causes permanent total central loss of vision. This happened to a friend of mine who lost her sight in both eyes within weeks of each other and nothing can be done for her.
Thank for the reply. My mum's consultant picked nothing else up other than age related dry eye MD. No bleed or anything else. Boots said, in their report, that they were trying to refer my mum for cataracts but the consultant never mentioned cataracts so, yet again, I am finding it difficult to believe what boots are telling me. Maybe I should copy and paste their report on this post for you all to read and guide me as to what is not ringing true.
Thanks for all your help with this,I feel that this is the last thing I can actually do, not just for my mum but for every deaf person that has the misfortune of visiting Boots opticians and I am not going to give up without a fight.
It is all very confusing. Did your mum have cataracts removed at any stage of her life? You have not mentioned it, or have I missed it? If not, then the referral for treating opaqueness of the new lenses is nonsensical. You say that the consultant never mentioned cataracts. That does not mean she did not have them, but if the AMD is very severe, as clearly it was in your mum's case, the removal of cataracts would not have made any difference to her sight and quite often consultants do not even mention them., as I learnt from my own experience. That may well have been in your mum's case especially in view of her hearing difficulty.
I hope you get your answers on Thursday. bless you, Moggie, for trying so hard.
Right first things first, I have managed to find and print off all the info from the links you sent me and also found an NHS site that is even clearer regarding consent. I looked at the NHS site because, having been sent all my mums medical information regarding her appts at Boots, I noticed that it said NHS. Maybe because she was over 75 she got it free as she has always paid for her eye tests.
My mum had two cataract operation, the last one being about 11 years before she died but what I cannot understand is why would the Boots optician want to send her for lazor treatment on her lens when the consultant never mentioned this???? Did the Boots optician mistake MD for her implanted lens going wrong????
I am still not convinced that her eyes could have deteriorated soon far so fast. I have done a bit of research and this can happen in vary rare cases.
I don't think I am ever going to prove the medical malpractice but the disability discrimination is a definite possibility as they will not have a copy of my mums signature refusing a referral, nor will they have a copy of the notes they supposedly sent her home with.
Will let you know over the weekend what was said between myself and the Boots man. You have been wonderful, usual, and I thank you.
Moggie x
Yes unfortunately dry can change to wet within this time frame. I am surprised that the opticians did not send their findings at least to the GP. Hope you find your answers.
As I have previously said my mum never had wet but dry and I am trying to find out the probability of her sight deteriorating so far and so fast over a 5 week period as I just do not trust what Boots are telling me. Their last eye test showed her MD was almost the same as it had been since 2010 but 5 weeks later her consultant gave a completely different set of figure, which were a lot worse than the Boots ones.
Thank you for your reply.
Moggie x
Hi moggie, I thought dry md was slow acting which suggests something else made things worse so quickly. Maybe the Mac Soc can advise ?
When she was tested in Dec what diagnosis was she given? Was it the cataract?
I have heard it's usual for opticians not to tell patients about early drymd as no treatment but don't know if they have any obligation to tell. I think most people would want to know so they could adjust diet etc. Again. What do the Mac Soc say?
I would say the onus is on Boots to PROVE she refused a referral.
Also, from memory of your earlier posts, haven't they changed their story? It's a different thing to say they couldn't get her to understand v she refused.
They were clearly dealing with a vulnerable person and I would have thought they had a moral if not legal duty of care therefore to follow up with her gp at least.
Do Boots have their own guidelines for dealing with deaf / other incapacitated patients? Were they followed? If they have none why not? I would ring the Royal College of Opthalmologists and ask what they would have expected to have happened.
No she was not diagnosed with cataracts just age related dry eye MD and I would assume that the consultant would know his stuff.
How fast age related dry MD can progress seems to be a bit of a grey area as, like you I thought it would progress slowly, and for years it was doing just that but my original question was can it go from slow to rapid in a matter of 4 weeks?????
I am now in two minds as to whether to copy and paste the report they sent me on here for you to read, would you be interested in reading it as I feel it is just excuse after excuse as to why my mum had such bad service.
Let me know if you would like a read and I will post if for you.
Right here goes, I will post it on here first and if it looks like it has got lost I will do a new post.
Thank you for your continued patience and for allowing me the time to fully investigate your concerns regarding your late
mother’s examinations at our Braintree practice, along with
the details you have kindly shared detailing your mother’s hospital appointment and subsequent registration as sight impaired as
these documents were very useful.
As part of my investigation I have received statements from the optometrists involved in your mother’s care as well as from the
non–clinical staff in the practice. I have also reviewed all the
clinical records and I am happy to respond to the key points raised in your letter of complaint.
With regards to your query as to whether the age related macular denegation had been missed at your mother’s appointments,
I can confirm that the condition has been clearly recorded on
the clinical records at the following examinations . This was
recorded at 21/01/2010 and again recorded on 04/01/2012,
23/01/2013, 18/11/2015 and 26/10/2016. I can also confirm that on
26/10/2016 the optometrist completed an additional test using an
Amsler grid which measures any distortion to the central vision,
this is commonly used to confirm the presence of dry and not wet age related macular degeneration. At each of these examinations the presence of dry age related macular degeneration
has been noted for which there is no treatment and therefore no referral can be made.
Despite the recording of the dry age related macular degeneration your mother’s vision has remained relatively stable during these appointments and at the most recent examination on
26/10/2016 was measured as right eye 6/12, left eye 6/10 +1
and 6/7.5 - 2 with both eyes. On Mr Fawcett’s letter dated 08/12/2016 your mother’s vision was recorded a s right eye 6/18 and counting fingers in the left eye. This significant reduction in vision would suggest that there was a marked deterioration in your mothers’ eyesight, especially in the left eye, following her appointment on 26/10/2016. Mr Fawcett confirmed the diagnosis of dry macular degeneration using a piece of equipment called an OCT, the most advanced diagnostic method of assessing the macula and he also concluded that there is no treatment for the condition. The optometrist that conducted the most recent examination on 26/10/2016, Mital Patel (GOC number 01-24585), has stated that if your mother had presented at this visit with the same level of vision that she subsequently had at the
appointment with Mr Fawcett, she would have referred her to a macular clinic and for a low vision assessment.
Dry age related macular degeneration is an incredibly frustrating condition as there is no treatment and the progression can vary. It is not uncommon for the condition to be stable for many years and
for a sudden progression to happen. Unfortunately this is difficult to predict and there is little that can be done to prevent this from happening. During your mother’s appointment on 26/10/2016 the optometrist offered a referral for a condition called posterior subscapsular opacification. This is a common condition where the clear lenses inserted during a cataract operation become clouded and can subsequently blur your vision. This is simple to treat by a day visit to the hospital where a non invasive laser can clear the cloudiness to improve vision. Your mother was offered a referral for this condition because given her level of vision at her
appointment on 26/10/2016, this was the only action we could take to try and improve her vision. The optometrist that performed this examination, Mital Patel (GOC number - 124585), has recorded that your mother declined a referral for this treatment.
Your mother then returned to the store on 23/11/2016 as she was struggling with her new spectacles. During this visit she was dealt with by a member of staff called Shannon Conlon who is
not a registrant. At this appointment Shannon spoke with the optometrist in clinic that day, Henry Obiozor (GOC number 01
- 27996), who advised that if your mother decided that she would like to be referred then he would be happy to action this for her. Shannon did observe that your mother was struggling to hear her and fully understand the conversation. In order to help communicate clearly Shannon then wrote some notes for your mother which she was able to take away with her to review with a family member. Shannon also advised your mother that she could leave a phone number of a relative and with your mother’s permission we would then have been able to explain
everything to the nominated family member.
At this point it was believed that although your mother had struggled to understand the conversation, she was happy to have some information in writing and was going to discuss the
situation with a family member before advising us whether she would like to be referred. I understand that you had a conversation with the practice manager Shelly Dobson about your mother’s potential referral. Although Shelly recalls having this conversation she cannot recall the full detail regarding what was said. I can only surmise at this point that Shelly was making the point that
the referral was for posterior capsular opacification and
macular degeneration was not the reason for referral. Shelley is not a registrant and would only be summarising what was recorded on the clinical notes. I apologise if this was not communicated with you clearly. I hope that the information above explains both how and why we dealt with your mother’s care. At every stage we have acted in your mother’s best interests by offering a referral for the only
condition detected that there was any treatment for, and by attempting to make concessions for your mother’s hearing difficulties. If we have failed to do so and caused any confusion regarding your mother’s care I sincerely apologise.
On the back of your complaint the practice have also reviewed how we communicated throughout this process and it has been concluded that should we come across a similar situation the
information will be put in writing by the optometrist so that the clinical information is clear and concise. Thank you again for taking the time to raise your concerns and for your patience whilst awaiting my response. I was disappointed to hear about your mother’s experience and I apologise if we could have communicated more clearly regarding her care.
Well that's the gist of it. Any comments on the above would be very much appreciated.
Thanks for taking the time to read this long report.
The definition of the amsler seems back to front. I thought the changes in distortion that it shows proves wetmd not dry. Also it doesn't say mum was given one to monitor at home.
Mira Patel recorded mum's refusal of referral but did mum sign? Anyone can write that she didn't want it ( at the time or after the fact). It doesn't prove she said so.
If Shannon noted communication difficulties and resorted to written notes why didn't Mira Patel also do this?
Do you have the information mum was supposedly given ? Who would have it? Can they give you a copy?
What referral was Henry Obiozor talking about? For cataract as previously offered or something new?
Why was it not followed up with mum then about her discussing prev referral with family? It would have been a test of the effectiveness of their communication which they cannot have been certain of.
What was deemed to be the struggle mum had with new specs? How did they check? Ie maybe her sight had already deteriorated by then and it might have been picked up with an examination.
...............
Moggie, I can't recall the exact text now but those links I sent have definite requirements on opticians regarding disabilities, communication, and duty to refer.
You should be able to compare and see what they didn't do.
I think the introduction to one says they must put patients first - I would argue that means not just. " believing" mum understood and leaving it at that but taking all necessary steps to ensure she ( or a more competent person involved with her) fully did.
I do wonder too how mum was properly able to answer the kind of questions one gets asked in an eye exam. How did optician satisfy themselves the questions were understood and the answers mum gave were meaningful?
Whatever final answer you get from Boots I would still send all the info to the orgs linked and ask for their comments on how things can be improved further for other deaf patients. That way nothing gets hidden and they can call Boots out on any failings to meet their duties.
It's a good thing you're doing but recognize that you might not get the answers you want. It's frustrating but don't make yourself ill over it. Pass the baton - there are charities for the deaf whose role is to advocate for deaf people and they are the ones to take the issues forward on a national level.
There are two things that really jar with me, the first being that if my mum had refused a referral why was she waiting for the postman every day and why did she then get me to phone and ask where it was, that in itself shows she did not understand what was going on. The second point it the reason given for the referral, which apparently was something to do with her cataract lens being cloudy, so why didn't her consultant mention this. He was a private consultant and I am sure that if he had a chance to make money then he would have done (yes I know I sound cynical).
I will look at all the links you have kindly sent me today and see what my next steps are. I will not give up the fight yet, but then again I am not silly enough to know when to step aside and let others take up the fight.
Thank you for all your help, I will update you with any further progress.
Thank you eyesight, yet again, for all your wonderful comments and info. Sorry I have not replied sooner but I have been unwell.
Yes Boots have changed their story and,as I said previously, when I refused a referral with Boots I was made to sign to say I had refused so I will be wanting that piece of paper plus the piece of paper that they supposedly wrote with information for her relatives to read.
Boots do not seem to have their own guideline when dealing with deaf people, which is amazing when you think that they now supply hearing aids as well.
I will look at your information carefully before I speak to the chap at Boots on Thursday as I feel someone somewhere down the line is not telling the truth with what happened to my mum as, like you said there is a big difference from refusing a referral and not being able to understand. If she had refused a referral why was she waiting for the letter to arrived????
Thanks for all your time and effort, you have been a star as usual.
I seem to be getting nowhere with either of the links you kindly sent me, especially the abdo,org.uk one. I have managed to find a little useful information on the other one regarding consent but not about refusing consent, which is what my mum did, according to them. I have been unable to find any of the points you are referring to on the optical.org nor the safeguarding and appendix reference on the second one. Maybe I am just being stupid but I am still not feeling 100% so maybe this is what is holding me back.
The statement of "Capacity to understand and retain information to the decisions required relating to treatment or care" seems to be a useful one and fits in with my complaint as my mum was not able to understand.
Will it be o.k. if I send you a final list of questions I am going to ask when this guy phones me on Thursday and any you feel I have missed can be added.
Will have another look and add it to what I have already got. Maybe tomorrow my head will be a lot clearer and I will be feeling more up to facing it. Having a three day migraine can completely wipe you out and that is just how I feel.
On the optical site I got all that you listed before but not 13b so will have another look and have just found the abdo information thanks to your clear instruction.
You are spending a lot of your time helping me and I cannot thank you enough.
I found this yesterday under an NHS site and it says it all "An assessment of a person's capacity must be based on their ability to make a specific decision at the time it needs to be made, and not their ability to make decisions in general. A person is unable to make a decision if they cannot do one or more of the following things. 1) understand the information given to them that is relevant to the decision. 2) retain that information long enough to be able to make the decision. 3) use or weigh up the information as part of the decisions making process, and I think my mum's failed on two of those - number one obviously and number three as she was 85 and very confused at times.
Will keep digging today and see what else I can come up with.
it may be that back in 2010 they didn't tell people so readily as there was little available treatment so maybe didn't mention to prevent worrying? Regarding refusal of treatment us there any chance they got you and your mums notes mixed? (Rather worried that you refused referral for what could be a serious problem such as glaucoma though?). My eyesight certainly deteriorated within a few weeks so may be possible. Started deteriorating a few weeks after all clear,
Hope you get a few answers about what is normal procedure. Best to write down your questions and worries before the call . . . And I really hope you get your own eye problems looked at. Best wishes.
It would be a miracle is they did get mine and my mums notes muddled up as I went to a branch 20 miles away from hers. So your eyes were fine one minute and you were almost blind the next yes? as my mum could only count fingers (which I have been told is as bad as it gets) in one of her eyes after only 4 weeks after her Boots appt.
Will certainly be writing down all the pointers people having been giving me on here and will be looking into the links that eyesright has kindly taken the time and trouble to find for me.
Hopefully I dont have any problems with my eyes apart from high pressure readings since I have been in my late teens (I am now 58). I have had numerous high pressure readings in my eyes but every time I have gone to the hosp (in London and local) these have been normal so when, yet gain, the reading was high I refused to sit down my local hosp for hours again. The local hosp have now got so fed up with optician sending people to them over this matter that they now ask you to go to another opticians and have another pressure check done before they see you as they have found that opticians equipment is not reliable and, according to the hosp, Boots are one of the worst offenders.
Thanks for taking the time to answer and for your help.
No sorry I didn't go from fine to almost blind just from fine to definite signs of macular. Just got home from injection and doc, whom I don't always see, says I'm reacting well but the other eye is showing something. I'm sorry your battle with Boots goes on. I've had probs with Vision Express and Specsavers last year but not with their ophthalmologists . Glad to hear there is nothing wrong with your eyes. I associated increased pressure with glaucoma which a friend has but sounds like you don't.
Sorry to hear you are still battling. Where I dont have MD, thank god, I struggle to understand what you people are actually going through but I admire your courage and determination with your battle.
Strangely enough my actual eyesight, apart from reading, has never been better. Nearly didn't get treated as they used it as the criteria rather than what the scan shows. So as long as you could read the chart it did not matter that you had a blob floating around in your vision or that straight lines especially staircases and walls were bending! Think they have changed that and maybe learnt that early treatment pays off. Now back to the thyroid forum for other battles! Mustn't grumble . .
What thyroid troubles catseyes, I used to be amin on that site but left due to a bad case of abuse but I still miss helping people. I do still get the occasional reply to an old post but always reply through PM as I just will not go on that site again. It wasn't so much the abuse but the admins reaction, or lack of it, to the abuse.
If there is anything I can do to help you thyroid wise then please do PM me as I have quite a good knowledge of thyroid - B12, vitd, iron, ferritin etc etc - issues having been there and done that myself.
Please let me know if I can help as I would love to give back to you guy's on this site for all the help you have given me and my mum.
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