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Government Wants To Know What You Think

Government Consultation

The Government Equalities Office (GEO) has launched a call for evidence to provide everyone in the United Kingdom, especially people with variations in sex characteristics, with an opportunity to engage with Government and to tell us in detail about their experiences and what they think Government could or should be doing to improve their lives.

Variations in Sex Characteristics

Our working definition of the umbrella term ‘variations in sex characteristics’ is physical sex development that is different to what is generally expected of males and females.

The sex characteristics of focus here are naturally occurring genetic, chromosomal, gonadal, anatomical and hormonal variations.

In addition to many others, it includes diagnoses such as:

  • Congenital Adrenal Hyperplasia (CAH)
  • Hypospadias
  • Androgen Insensitivity Syndrome (AIS)
  • Klinefelter syndrome
  • Turner syndrome

Variations in sex characteristics is the umbrella term we have chosen for this exercise, but we are also aware that there are other terms in use, such as intersex and differences of sex development. When responding to this call for evidence you will have the opportunity to share your views on the term we have used.

A call for evidence is an information gathering process. It is not a consultation, which is a process of gathering views on Government’s legislative or policy proposals.

Alongside the call for evidence, we have also published a technical paper that sets out our current understanding of the evidence base and the relevant policy context.

The Government Equalities Office (GEO) wants all respondents to feel confident that any information they share with us through this call for evidence will be handled sensitively and in confidence.

We understand that having to provide details about your personal experiences when responding to the questions might be difficult. We take this very seriously and have included a list of resources at the end of the call for evidence for people to obtain support.

Once the call for evidence has closed, the Government will review and analyse the responses we receive. We will then publish a report of what we found and a statement detailing any next steps.

Read all about this call for evidence and submit your views here.

Hypospadias Support & Education – Welcome

This site is published by the Hypospadias UK Charitable Trust, which has been formed to support men and boys with hypospadias.

The site is written for boys, men, and parents of boys, with the aim of providing basic information and advice for anyone who has the condition called hypospadias. This is a relatively common birth defect, but it is rarely discussed, and very little has been written about it for the lay reader.

Of the four persons who have contributed to this website, three have hypospadias themselves and the fourth has extensive experience in discussing issues and counselling men with the condition.

The level of discussion and presentation is intended to be suitable for people without specialised medical training. We have included commonly used terms instead of scientific names in the hope that this will make the material easier to read and understand. Where appropriate we have given the anatomical or medical term in brackets ( ).

This site is NOT meant to be a scientific review or a discussion of the relatively little scientific and medical literature that has been published to date about hypospadias. However, some of the issues discussed here are based on authoritative sources, and references can be provided if required.

None of the authors of this site is a surgeon specialising in hypospadias. It will quickly become apparent that we believe that there may be too much emphasis placed on corrective surgery at present.

While the severity of your difference from the normal may call for surgery in many cases – and there are many examples of excellent work being done in this field – we think it is important to recognise that choosing not to have surgery is often a viable option which may deliver better long term outcomes, particularly if counselling and support are also provided as required.

If you want to take part in more discussions with men who have hypospadias, or see some illustrations and pictures of hypospadias, check out the discussion forum on Yahoo groups (over 18s) at https://groups.yahoo.com/neo/groups/HypospadiasMen/info

Other resources include the Hypospadias and Epispadias Association of America.

Facebook has many support groups – search on the words hypospadias, support, parents, etc and you will find many to choose from.

The Daily Mail has published some interesting articles in recent times:

https://www.dailymail.co.uk/health/

https://www.dailymail.co.uk/health/article-3349874/

https://www.dailymail.co.uk/video/health/video-1134877/

https://www.dailymail.co.uk/health/article-409521/

https://www.dailymail.co.uk/health/article-2064554/

and the Daily Telegraph

https://www.telegraph.co.uk/men/health/

And here’s a very interesting article by Professor Alice Dreger – Do You Have To Pee Standing Up To Be A Real Man?

 

Could You Help With A Research Project?

I am Dr Keeley Abbott and I am a researcher at Birmingham City University.

I am carrying out a research project (alongside Dr Jagjeet Jutley-Neilson) that explores parental pre-operative and post-operative experiences and concerns of hypospadias repair.

As such, I am interested in talking to parents who are considering surgery but perhaps may be uncertain of whether to proceed, or those who have decided against surgery.

The study involves taking part in a short (informal) interview via telephone or skype. The discussion will cover areas of concern pre-and-post surgery and decision-making/attitudes around surgery.

We are specifically looking to talk with:

• Parents with children pre-surgery (within 24 months of birth or in the last 3 years).

• Parents considering surgery for their child or those who have decided against surgery for their child

Please note – parents must also be English speakers.

If you are interested in taking part, I will send you further information about the study.

If you are happy to take part then you will be asked to sign a consent form before completing a brief online questionnaire. This will include some basic demographic questions, as well as contact information.

Please use the email address below to express an interest in taking part in the study or to receive further information.

Research contact detailskeeley.abbott@bcu.ac.uk

Please do not hesitate to contact me if you have any further questions. I look forward to hearing from you.

Dr Keeley Abbott

(and on behalf of Dr Jagjeet Jutley-Neilson).

Would You Like Some Support?

Resources for parents

Facebook closed groups are a very helpful resource for parents.  If you apply to join, you will need to answer some questions to ensure you are a parent of a child with hypospadias.  The sites are very friendly and supportive. Search on Facebook groups for:

Original Hypospadias & epispadias support group.

Hypospadias Parent Support Group (Pro-surgery and Pro-choice)

Hypospadias/Epispadias Support Group v2

Books

A useful book to read.

https://www.amazon.com/dp/1475088973/ref=cm_sw_r_cp_api_j02ZAbBCF6EK9

For men with hypospadias

If you want to talk with a man who knows what hypospadias is like, and get the support of sharing your experience, fears, and hopes, please email us.

We have all been through the experience of living with hypospadias, in varying degrees, and we know how important it is to end the feeling of isolation and aloneness with friendly support.