Tuesday, 7 June 2022

Requesting Rectification of your Personal Medical File held with a private GP/other (plus info re a public doctor)

 

Individuals have a right to correction of their personal data under data protection legislation. This also applies to medical data.

If you have a good relationship with your GP/doctor/nurse/ other you could try to explain and ask that incorrect information on your medical record be changed/deleted.

If for whatever reason you can’t or don’t want to discuss this with your GP/doctor/nurse/other, or have tried to discuss the matter already without success, you can write a Request to rectification letter to the practice. See information about this below.



 





Requesting Rectification to a private GP/other private healthcare provider

 

Step 1.

 

The first step is to send a rectification (correction) request to your GP Surgery/Practice which will go to the practice’s Data protection Officer or passed to another relevant person. Send by email to the GP practice with subject line ‘For the attention of the Data Protection Officer,’ or post to your practice with same on envelope.

 

 

Template letter

The Request to Rectification Letter could be a simple letter e.g.

 

 

Dear Sir/Madam,

In accordance with Data Protection legislation, I seek an amendment of my personal data held by Dr x/Nurse x/other.

I claim that the record/s described below contain/s information relating to my personal data that is inaccurate meaning: incomplete/incorrect/misleading.

The information which I believe is incomplete/incorrect/ misleading (please attach relevant copy of record if you have that) is as

follows:

………………………………………………………………………………..

………………………………………………………………………………..

………………………………………………………………………………..

 

The reasons why I claim the information is incomplete/ incorrect/misleading are:

…………………………………………………………………………………

……………………………………………………………………………………

…………………………………………………………………………………….

 

 

I want the line that says ‘…..’ completely removed/amended to acknowledge my reality/the reality of my illness and situation because ……….

Please amend to say ‘…..’ or ‘no suggestion to replace, please leave blank.’

 

If I don’t hear back from you within 30 days or if the matter has not been rectified to my satisfaction, I will be taking the matter up with the Data Protection Commissioner.

I understand that I have a right to have incorrect information on my medical file amended as per

(1)   Article 5(1)(d) of the General Data Protection Regulation (GDPR) states that: “Personal data shall be … accurate and, where necessary, kept up to date; every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased, or rectified without delay.”

And

(2)   Article 16 GDPR states: “The data subject shall have the right to obtain from the data controller without undue delay the rectification of inaccurate personal data concerning him or her. Taking into account the purposes of processing, the data subject shall have the right to have incomplete personal data completed, including by means of providing a supplementary statement.”

 

Yours Sincerely,

 

 


Included in the above: -

You should state in your letter what personal data you believe is incorrect, misleading, or incomplete and what you want changed. You should also provide evidence that will support the changes you request if you can.

If your personal data is incomplete, you have the right to have the data completed. This can be done by providing the supplementary information.

 

It is a good idea to keep a copy of what you send in your request for rectification in case you need to carry out step 2, i.e., complain to the Data Protection Commission so that you can include evidence of your attempt to rectify with your GP/doctor/other.

 

 

Step 2.

What can I do if I am unhappy with the outcome of an access request?

You may be unhappy with the way your request was handled because:

·       There was no response or a delayed response to your access request

·       The response to the request was incomplete

 

If you are not satisfised with the outcome of your rectification request to your GP you can contact the Data Protection Commissioner, outlining the situation. Please send your complaint to email address info@dataprotection.ie  or complete the Data Protection Commissioner webform here

 


How do I make a complaint?

You will be asked to provide evidence to support your complaint. This includes:

·       Evidence of your access request

·       Correspondence between you (or your legal representative) and the data controller and

·       information in support of your belief that the data controller holds incorrect personal information about you

 

 

The Data Protection Commissioner (DPC) is Ireland’s independent authority with responsibility for upholding the right of people in the EU to have their personal data protected. It monitors compliance with GDPR and other data protection legislation and deals with complaints in relation to data protection breaches. The DPC website contains helpful explanations of data protection law.

 

 

Step 3.

The Data Protection Commissioner will get an officer onto your case who will contact you/process your complaint.

 

 

What the right to rectification means in practice will depend on the circumstances of each case and the Data Protection Commission (DPC) examines each case that comes before it on its individual merits.

 

In general, data controllers will be required to take all reasonable steps to ensure the accuracy of personal data, taking account of the circumstances of the case, the nature of the personal data and, in particular, the purposes for which they are processed.

The notion of accuracy has to be interpreted in light of Article 5(1)(d) of the GDPR which states that every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased, or rectified without delay.

 

See more here:

- https://www.dataprotection.ie/

 

- https://www.dataprotection.ie/en/dpc-guidance/blogs/examination-right-rectification-complaints

 

 

 

 

 

Requesting rectification to a public GP/doctor other healthcare provider i.e., via the HSE

 

The Data Protection legislation gives you the right to ask to have personal data on a record about you held by the HSE amended, where it can be established that the information is incorrect.

If your personal data is incomplete, you have the right to ask to have data completed, including by means of providing supplementary information.

The right of rectification is restricted in certain circumstances under Section 60 of the Data Protection Act 2018, which provides for restrictions that are necessary for important objectives of public interest, and by Section 43 of the Act which seeks to balance the right of rectification with the right of freedom of expression and information.

 

How do you do this?

You must state in writing what personal data you believe is incorrect, misleading, or incomplete and what you want changed. You should also provide evidence that will support the changes you request.

Alternatively, you should complete the Request for Rectification form and send it to the relevant Deputy Data Protection Officer listed in the contact list on the last page of the form and here

The HSE decision maker may need to contact you if additional information is required.

 

Here is the Request for Rectification form to be completed 

 

 

Can you appeal against the decision?

If you are not satisfied with the decision on your application, you may make a complaint to Data Protection Commission, 21 Fitzwilliam Square South, Dublin 2, D02 RD28, or How to contact us | Data Protection Commissioner


Tuesday, 31 May 2022

Day 31 Myalgic Encephalomyelitis (ME) Awareness Month

 


We would like to thank everyone for their incredible support to us, educating and raising awareness about Myalgic Encephalomyelitis (ME) during May, and for all the likes and shares, the comments and messages.

Thanks to those who were dedicated to sharing information and advice about ME daily for 31 days, your encouragement and underpinning of our work was greatly felt and appreciated.







 

On the last day of ME awareness month, we are pleased to share poems by Rosalynde Lemarchand (The French Femme) who has written from and about her own personal feelings and experience of living with ME for over 20 years. Rosalynde’s poetry echoes the thoughts and feelings of so many others who suffer like she does. Her poems aim to portray the harsh reality of living with a long-term chronic illness.


At the start of May, Rosalynde announced the publication of her new book 'Another 31 Days in May' for awareness month. This book is made up of a selection of 31 short poems to raise better awareness and understanding as well as to raise funds for the charity Invest in ME Research. 

The book is available in paperback and kindle edition and all proceeds from the sales will go to Invest in ME Research. Thanks to Rosalynde for raising awareness about ME in easy to read poems that tell others how it is with Myalgic Encephalomyelitis (ME). 

Here is a link to her book .




Poems shared by Rosalynde during May, ME awareness Month







































Again, thank you for your support during May. Please continue sharing our ME information posts published during May and pass on any resources/tools from those posts that you may find useful to others in the ME community.


 

Monday, 30 May 2022

Day 30 Myalgic Encephalomyelitis (ME) Awareness Month


“Living with ME is a bit like living in a prison. The size of your cell depends on how ill you are. It can be your bed, it can be your home and when you leave your cell it comes at a high price, because you risk the chance of relapse.”

 

 






 




It is International Myalgic Encephalomyelitis (ME) Awareness Month and today’s ME Awareness post is dedicated to Retha Viviers, founder of the ME CFS Foundation South Africa.


We have never met you but feel that we know you through your endless and selfless advocacy work to raise awareness for people with ME in South Africa.


Retha founded the ME CFS Foundation South Africa, the only ME charity in South Africa, in 2016 because there are an estimated ± ‪110 000 patients in South Africa; there is no other private or government assistance for patients; 75-85% of patients are too ill to work; and there are no disability benefits available for South African ME/CFS patients. Retha has made it her life mission to raise awareness for ME and to practically support patients in dire need.

Retha started her career in Market Research and moved onto Business Analysis and Strategic Planning. She worked in the petroleum, cement and construction industries. Projects ranged from Market Research, Health and Safety compliance, Feasibility Studies and Project Management. She was diagnosed with ME and a few years later formed a closed support group for people with ME (and Fibromyalgia) on Facebook in November 2012. She then went on to establish the ME CFS Foundation South Africa, a new purpose in life, one of helping others in the same or worse situation her family was in. It has been her passion to make a positive difference in the lives of others with ME.




“I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post exertional malaise.

ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability, it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.

From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. I started a support group on Facebook in November of 2012 and over the years saw the dire need of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.

Why did I co-found The ME CFS Foundation South Africa? I realised something had to be done and co-founded The ME CFS Foundation South Africa. I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from the bed. I always have to religiously stick to my resting schedule and there are still days where I am too ill to do anything. Fortunately, there are 3 other co-directors. Each person reached makes all the hard work and sacrifice more than worth it.” 

~ Retha Viviers (from ME CFS Foundation South Africa’s website)

 

 


Here is Retha talking about how she lives with Myalgic Encephalomyelitis in a short film about life with Myalgic Encephalomyelitis (ME)


 

 

Retha has worked with determination and dedication to help people with ME in South Africa by creating awareness and giving physical and emotional support. She and her foundation go above and beyond to assist patients in need with the following medication, food and basic necessities, visits to health care practitioners, airtime, and data (as many patients are housebound and have no other means of communication). All assistance is completely resource dependent. The foundation receives no government assistance and is completely dependent on donations.


The ME CFS Foundation South Africa’s aim is to transform lives and advocate for appropriate healthcare and dignity for people living with ME. ‘The ME CFS Foundation South Africa is the first entity of its kind in South Africa (and Africa) founded in response to a devastating multi system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. If you’d like to know more about The ME CFS Foundation South Africa, please visit their website www.mecfssa.org

 







At the start of ME Awareness Month we were saddened to hear that you are seriously unwell Retha. We hope you know that we are thinking of you every day.

We are grateful for all that you do for people with Myalgic Encephalomyelitis (ME) in South Africa, and for your ME education and awareness raising which has reached all corners of the globe.

Sunday, 29 May 2022

Day 29 Myalgic Encephalomyelitis (ME) Awareness Month

 


ME Advocates Ireland (MEAI) – Advocating for People with the Neurological Disease Myalgic Encephalomyelitis

 

We urgently need:

·       To adopt & use the International Consensus Criteria (ICC) - to include accurate diagnosis

·       To include ME in all teaching – GPs, Medical, Nursing, Social Care

·       To train health professionals – all acute and PCCC staff

·       To design specialist training modules for ME to create GP awareness

·       To appoint an ME consultant as a national lead for ME

·       Clinical Care Pathways (Paediatric & Adult)



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-          THERE IS NO NATIONAL POLiCY ON MYALGIC ENCEPHALOMYELITIS (ME)

In the absence of clinical guidance on ME, acute and community staff have no lead, nowhere to turn. It is recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition with information in relation to the care and support available through the HSE to adult s and children. 

There is no recognised set of criteria used by the HSE - In the absence of clinical criteria on ME, acute and community staff have no lead, nowhere to turn. – It is recommended that the HSE adopt robust criteria such as the International Consensus Criteria, 2011.

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-          THERE IS NO KNOWLEDGE AMONGST GPs

·       It is potluck as to the GP’s ‘belief’ of what ME is, is it organic, does it have a specific pathophysiology, is it psychological or is ‘the patient’ not-coping with life?

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·       Many medics do not regard ME as an organic presentation.

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.       Most have no knowledge of the pathophysiology of ME, their reference is ’fatigue’.

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·       Attitudes to service users range from supportive on a person-centred level to dismissive and blaming for not ‘making an effort as there’s nothing wrong with you’.

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·       Standard bloods come back within lab range. No knowledge of issues with low in range results or too high in range.

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·       ME appropriate tests are not done, e.g., NASA lean test and others mentioned in the International Consensus Primer (ICP).

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·       GPs have no idea of a referral pathway to an ME knowledgeable consultant; some ask their patients if they know who to refer them to.

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·       Treatment/management of ‘obvious symptoms’ is not based on an understanding of the pathophysiology of ME.

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·       No knowledge of the concept of post exertional neuroimmune exhaustion (PENE) whereby as energy supply decreases the body’s functions shut down to enable the essential organs of survival to function.

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·       GPs seem unaware of the severity of ME as patients attending a GP are mild or moderate or are those within the more severe categories who use their ‘one off mind over matter’ energy to get to and from the surgery, but then experience the exacerbation of symptoms which PENE triggers for a period of time making the basics of daily life such as food, fluids and heat pushing the person further into PENE.

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·       Those at the most severe end of the ME spectrum, the severely and profoundly ill ‘do not exist’ as they cannot attend a surgery.  House visits are ‘unusual’, and many GPs have no understanding of the needs of a person with severe/very severe/profound ME, certainly ME is not seen as a reasonable reason for a house call.

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·       GPs seem unaware that the quality of life of people with ME is the lowest of ANY chronic illness.

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·       Many GPs believe children ‘can’t get ME’.

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·       Parents with children with moderate ME are encouraged to push their child into ‘normal’ activities, which, given the pathophysiology of ME creates a high probability of deterioration.

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·       GPs refer children to paediatricians in local hospital groups, where the same lack of knowledge and attitudes referred to with reference to GPs are found.

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·       Referrals to the Children’s Hospital Group raise further issues as the group continues to advocate CBT & GET, both designed to dismiss and deny the child’s experiences of their body by requiring them to ‘push through the warning signs as they are unhelpful illness beliefs’’ which has the potential to cause psychological harm to a child who is ill.

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·       A further issue arises when school attendance falls below accepted levels, as neither EWO’s, Social Services or Tusla understand ME or the potential for causing harm by forcing a child to attend school when they are struggling to manage the basics of daily life.

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·       The lack of GP knowledge means that the ‘early’ support system which contextualises the clinical presentation and defines, through discussion with the child and the family,  what is and is not possible in terms of activity, is absent.  This lack of clinical support and guidance to those in community services leaves a family and the child without the supports they needs and in fear of the uninformed judgements being made about them, therefore their problem is increased by both health and social services rather than them being supported.

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·       This absence of clinical context provided by the GP increases the risk of harm, to the child, possibly causing permanent harm, and lowers the opportunity for remission/recovery which a child, effectively managed, has a greater chance of achieving than an adult.

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·       Once a child is of an age to leave Children’s services, there is no ‘joined up’ service provision or referral route. Many paediatricians retain their patients beyond the age ‘cut off point’ as there is nowhere to send them.

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·       For those who are referred to adult services there is no transfer of files from Paediatric to Adult services.  Files are simply closed and stored away so for those with ME it is like starting the journey, into the unknown, all over again.

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·       The risk of poor experiences in Paediatric services due to having ME can result in caution/fear when entering Adult services given the lack of knowledge or consistency in acknowledgment that ME is a WHO classified neurological disorder.

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-          THERE IS NO KNOWLEDGE ABOUT ME AMONG CONSULTANTS/SPECIALISTS

·       If a person is referred to a consultant, the common experiences are as with a GP.

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·       Neurologists, cardiologists, and rheumatologists etc. largely dismiss the aspects of ME which sit within their specialities as they do not meet the threshold for intervention according to their clinical guidance. 

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·       Without the involvement of a clinician who understands the complexity of ME as it affects all systems and organs, the attempts of one speciality or another to address one aspect of a presentation or ‘a symptom’ can lead to further imbalance or a further experience of ‘nothing to see here’ and dismissal.

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The HSE’s often stated response that people with ME are given ‘symptom management’ can reasonably be stated to be an act of neglect. The ME community is an unusual one as they have no HSE ‘Lead’ or even anyone with an interest in ME that the HSE can identify.

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·       It is hard enough for those assigned to a disease specific consultant or one knowledgeable about their illness to overcome the barriers living with disability provides.  Having ME adds a further barrier and inequality, as many have no access to a consultant, and for those that do, there is no knowledge of the underlying pathophysiology which can be emphasised to support an application as listed above.

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·       Access to support in the home, care, adaptation grants etc all benefit hugely from the support of a consultant, but for most with ME, this support is unavailable.

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·       Consultant support for those who cannot leave their homes is absent.

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·       Collectively, we have met only two consultants who ‘speak the language’ of ME and have some grasp of the complexity of the disorder and the dreadful toll it takes on the life of the individual sufferer and their families. But they are not ME consultants and have other roles which takes from there potentially being a knowledgeable ME consultant available fulltime. With the numbers with ME it is not practical that we continue to do without ME leads in each CHO.

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·       How many people with ME avoid hospitals and acute services as they do not believe the investment of their energy to attend or be admitted will pay any dividends?

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·       How many people with ME have experienced harm and have deteriorated due to an admission?

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·        Hospitals too often evidences a dismissive response from staff, a denial of the illness or even any awareness that it exists and denigration of the person with ME is all too often a reported outcome.

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-          THERE IS NO TRAINING IN MEDICAL SCHOOLS

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-          THERE IS NO EDUCATION AMONG MEDICAL PROFESSIONALS

When will the HSE & Government become sufficiently aware of the harm being done to adults, and to children and families across the country who are suffering due to the lack of knowledge of ME?

Until there is an objective framework of standards, based on a sound and quality evidence base, there can be no accountability.

How can the HSE hope to address a situation if it does not know what the territory is?

Qualitative and quantitative data are required for the HSE to understand the complexity of the current situation re ME.

Government health departments “worldwide” need to take responsibility for this massive injustice that has left ME patients without appropriate healthcare, thus afflicting them with the poorest quality of life than most major diseases (some of which aren’t nearly as common).

There are millions of people with ME suffering year after year, decade after decade with no end in sight. The logical way to highlight a disease is to talk to, and about those who unequivocally have the disease. There’s absolutely no substitute for first-hand knowledge.

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ME Advocates Ireland (MEAI) are continuously and steadily working to get the HSE to commit to creating guidelines and guidance for people with ME in Ireland, for all age groups and all severities, across all HSE services. By all age groups we mean Adults & Paediatrics; by all severities we mean those with Mild, Moderate, Severe, Very Severe, & Profound ME.