Living Without HepC

Yesterday I posted information about the Hepatitis C Awareness Campaign. The caption I have chosen to appear beneath my portrait in the exhibition is “It’s time we all stopped discriminating against people with hepatitis C”.

So discrimination is a topic on my mind as I think about my current experience applying for Registration as a Social Worker.

The General Social Care Council was established in 2001 to operate a Social Care Register of Social Workers. This will be similar to other professional Registers, such as those for nurses and doctors.

As I have a qualification in social work, I duly applied for registration in June 2004 (in plenty of time before the required date). According to the GSCC, a legal restriction called ‘protection of title’ will be introduced in April 2005 in England, which will mean I will need to be registered to call myself a social worker after that date.

In filling in the questionnaire, I encountered this question in the Health Section:

Do you have a physical or mental health condition that may affect your ability to undertake your work in social care?

I was about to tick the “No” box when I saw the reminder to check the Guidance on filling in the Form about health conditions ‘we need to know about’. This section advises:

The law says that we have to make sure that everyone who is registered is ‘physically and mentally fit’ to work in social care.

Telling us about a health condition will not necessarily prevent you from being registered.

What you must tell us about your health and why

You must tell us about any physical or mental health condition that affects your ability to carry out any role in social care safely. This includes your current role and any role you might have in the future.

By safely we mean that your physical or mental health condition should not affect your judgement or performance in a way that poses a risk to others.

If you are in any doubt about whether a condition you have may affect your ability to carry out any role in social care safely, tell us about it anyway.

We do not need to know about any short-term illness.

It is impossible for us to list all the conditions we need to know about, but they include:
• conditions that may cause seizures
• conditions that may result in short-term memory loss or lapses in memory
• treatment or medication you are taking that may result in short-term memory loss or lapses in memory
• serious communicable diseases
• serious mental ill health, or its treatment
• substance dependence including substance dependence for which you are receiving treatment.

Checking the Department of Health website, I found the definition of ’serious communicable diseases’ includes HIV, Hepatitis B and C and Tuberculosis. So, they say I must declare my illness.

So, even though I can answer the question ‘No, my condition does not affect my ability to undertake work in social care’, I am told I must declare my condition. And the wording of the question, on closer scrutiny, contains the wording -’may affect my ability’. What the hell does that mean? Either it does or it doesn’t - how can anyone answer questions about the future with the black and white certainty that these formal questionnaires require?

It strikes me that this is double-bind situation all around. Catch 22. Even though I can operate effectively and have done so all my career (probably all that time with HepC), I must now declare myself to be a sick person whose condition may affect their abilities in the future.

I recognise there is ‘public safety’ issue in here. There should be some mechanism to ensure that the public don’t contract disease from professionals. There have been incidents of doctors and dentists with HIV infecting numbers of patients through their contact. But this is surely a ham-fisted and flawed way of going about ensuring public safety!

Not only does it put me in a double-bind but it makes me feel I am being discriminated against!!

At the time I filled in the application, I decided to write on the form:

I have been diagnosed with hepatitis C which the Department of Health has termed a serious communicable diseases, and therefore I must declare this to you.

I have no doubt that I can and do, nonetheless, carry out my work safely without risk to others.

My work role does not involve any personal care or physical contact with others, either clients or staff. As Hepatitis C is a blood-borne virus there is no other opportunity for the virus to be passed on except by the exchange of blood products. The likelihood of this event occurring is infintesiminally minimal.

I believe I can continue to safely carry out my work without conditions being specified.

This week, eight months later, my response has automatically brought a further Health questionnaire form from the GSCC. It is now only a month away from the introduction of the ‘legal restriction called protection of title’ and therefore the requirement to be registered.

I find it offensive that it has taken eight months to send out a form that is automatically sent out to anyone declaring an illness. Clearly I won’t be able to legally operate as a social worker next month. And I did apply in plenty of time!!

But more offensive are the nature of the questions I must now answer. I write them out here to try (again) to absorb them and think about the implications of the answers:

Q1. Please tell me more about the nature of your condition and describe to what extent and when it affects you physically and mentally.

Q2. Has your condition affected your performance in either your current or previous employment?

Q3. Please describe to what extent you feel your condition could impact on working either directly or indirectly with service users.

Q4. Please demonstrate how you currently manage the condition to ensure that service users will not be placed at risk.

Q5. Does your employer know about your conditions, and if not explain the reason why?

Q6. Please describe any action taken by your employer in respect of your health.

Q7. Do you think you can work safely in social care?

Q8. Is there anything you wish to add which you consider to be relevant to your application to register?

For me, more double-bind questions ‘ Q1, how HepC affects me mentally and physically; Q5, telling my employers and why not; and Q4 & Q7, how I manage my condition to ensure service users aren’t put at risk.

Anyone reading this blog will see it is full of examples of how Hepatitis C, and the treatment I am on, affects me mentally and physically. If I were to supply these examples in answer to that question I can’t see how this wouldn’t raise questions about my competence to do this (or any other) type of work. Also, I am on treatment currently and so the answer is pertinent only to this point in my life.

However, I am also clear that HepC has never impacted on or affected my work in the social care field. And, it is likely that I have been infected throughout this time.

So, how do I give a frank answer to Q1 which covers all this??

Telling my employers is another issue. I didn’t know I was infected when I last applied for any employment posts - so they weren’t told. Over the past 15 years, I have worked as a self-employed independent social worker in a variety of assignments and projects. Since diagnosis, when a social services department, for example, has asked me to act as an Independent Witness in Care Proceedings in the Family Law Courts I have never said - ‘yes, well I have Hepatitis C, you know’. I am quite certain they would not have been interested in my personal health, only the assessment I was being asked to carry out.

I haven’t avoided answering any questions about my health from those who have commissioned my services (and they aren’t employers in that sense). I am generally open and upfront about having HepC - but the question of my health hasn’t arisen as a matter of discussion with these ‘employers’.

Also in ‘telling my employers’, there is a question ‘if not explain the reason why’. Clearly this implies that anyone with a serious condition should tell their employers. Saying I haven’t told them sounds like I have kept it a secret (irresponsibly!). I have always been under the impression that medical matters are personal and don’t have to be declared. I thought this is a personal right to privacy. Where did I get that from? Am I now in a category of persons who are obliged to signal clearly they are infected? Carry a sign on my forehead?

So it feels like my answer to Q5 is not likely to look very good, either appearing secretive or irresponsible in ‘not telling’ my employers!

In respect to Q4 & Q7, there is another double-bind. I have to answer the question not only about what roles I actually undertake - but also about any role in social care. I am not about to start providing physical care of the under-fives, for example - but I have to answer the question about working safely to include this and any other such social care role!

I had already made a statement in the original application form (and quoted above) about ensuring the safety of service users. (Never mind the bureaucracy ignored that and has asked again - and taken 8 months to get around to it.) I am not sure what more I could say specifically to answer this - other than to say ‘I make sure I don’t bleed on them, especially if they have open wounds or sores’. I think that covers it, but the GSCC might think it an unacceptable response. (Or recognise it as the sarcastic comment borne of anger that it is!)

And I have to think about how the GSCC responds to my answers - if I want to preserve the right to use a title in an arena where I have worked over thirty years and for which I studied at Master degree level. The risk, of course, is being refused registration in what has been my profession for decades.

I know that I will go through and fill in this latest set of ‘tricky’ questions with as neutral and minimal information as possible to facilitate the registration process, post it off and hope the outcome will be positive.

But I am pissed off with being put in this position.

Is it just HepC or riba-rage that makes me react this way? Or is there a form of discrimination going here?

The double-bind questions. And do I have right to keep private my medical condition? (I know it could be said it’s a bit rich for someone who has a blog about HepC to be complaining about some government organisation saying I must declare I am HepC on an application form — but the point is, saying I am HepC on the internet [or elsewhere] has been my choice and my information to give - I have had the right to exercise that choice!)

And what do I do with the pissed off? I know I will be expected to understand and accept that the GSCC have taken an inordinately (and, I daresay, inefficiently) long time to process my application form. But can I expect them to ‘understand and accept’ how offensive their questions are and how I have experienced them?

What do you reckon? I would guess, most staff of the GSCC wouldn’t see the point of my response - (it’s not discrimination, it’s a public safety issue) and I reckon a complaint would produce the response that the processing of my application has been done in accordance with procedures. So, again I am pissed off that the ‘understanding and accepting’ will all have to be done by me!

I should add, before I finish what is becoming a rather long posting, that I have also researched the minutes of the GSCC’s Board of Director’s meetings (the internet is a powerful tool) and know that their policy is to register anyone with an illness or condition (at this stage of implementing the Registration). I also know that I will complete their process as required before I raise any complaint or discussion about the process. But I did want to make a formal record of my views and feelings in March 2005 to refer back to - and to begin to raise awareness that issues of discrimination around Hepatitis C need to be discussed and addressed.

This entry was posted on Monday, March 7th, 2005 at 6:51 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.