Total Community Care - Specialists in spinal & neurological care

Providing bespoke care nationwide for clients with spinal injuries and neurological conditions

20 Sep

The Ability To Be You

Often at TCC we focus on the challenges of finding the right person to support our clients and quite rightly this can be a difficult process due to the nature of the role and the invasiveness of being or having people in your home.

I would like to take a look at this issue from a different perspective, what if you were required to have support due to your condition or disability, but the people you let into your home refused to accept who you were.

I recently sat down with a close friend of mine to talk about this subject matter. Jemima Isobel Grant, 36, has Complex Regional Pain Syndrome (CRPS) and whilst medical professionals are unwilling to connect it to a head injury she experienced in September 2003 in her mind they are linked. Since August 2008 Jemima has experienced a constant excruciating burning pain in her right arm, shoulder and between the third and sixth cervical vertebrae. The pain never goes away, it can be reduced with medication but is always present and means Jemima is unable to perform certain tasks.

Jemima wasn’t given a diagnosis of CRPS until April 2012 after already having spent considerable time in pain and she wouldn’t be awarded funding for social care and support until March 2017 after spending months fighting for assistance.

Whilst this was happening Jemima was undertaking psychotherapy and had come to another realisation, she wasn’t who it was decided she was at birth. She had always felt different but wasn’t sure how. Whist discussing these thoughts and experiences with her doctor a TV show was released on Netflix, Sense8, a show that celebrated diversity in all forms; race, sexuality, gender and religion. It was at this point Jemima realised she was a woman which is not the gender she was assigned at birth.

Medically this is known as Gender Dysphoria and the NHS describes it as “a condition where a person experiences discomfort or distress because there’s a mismatch between their biological sex and gender identity.”

Following on from her psychotherapy Jemima made the announcement that she would be taking the steps to reassign her gender in a blog post and start the process of becoming her. Unfortunately, this is an extremely slow process and once being referred by a doctor to the Gender Identity Clinic it takes a minimum of two years of a person living as their chosen gender before they will be considered for surgery and to officially have their gender marker changed.

So, despite having made the decision to live as a woman, officially, according to the government she was not, this means that all her documents and the council that funds her care and support were not in the correct gender or name.

With the funding agreed for 17.5 hours of support a week through direct payments Jemima was provided with a list of personal assistants and left to find a package of care for herself.

Some of the initial interviews Jemima undertook with people from the personal assistants register, Jemima had felt there was too much of an age difference and they were uncomfortable around Jemima and set in their ways.

After time searching Jemima found someone whom she initially felt would suit the role enough to allow into her home, this was all still very new to Jemima and she was still struggling with mental health issues for depression and beginning her life as a woman. It would be a month before Jemima felt comfortable enough to make eye contact with her personal assistant.

As time went past Jemima’s personal assistant decided to take on some of her friends as well and before long Jemima had a team of three people but had no semblance of a rota and never knew who would be coming through her door each morning and afternoon.

As part of Jemima’s funding there were supposed to be hours used for socialising and enabling Jemima to exist and be out within her community, however this was not happening and one of her personal assistants even stated she would be unwilling to go out with Jemima and use the mileage on her car. By Jemima’s own words, the team were not there to support her and were glorified cleaners with no experience or background and training in care.

But worse than that they refused to acknowledge Jemima’s life and that fact she was a transgender woman, only ever referring to her or speaking to her by her pervious name. Having had the courage to come out publicly and announce that she would be transitioning to become a woman, each and every day she was reminded that she was not by the people that were there supposedly to help her live her life to the fullest possible.

After six months of this Jemima finally couldn’t take it anymore and decided to remove the friends that had been placed upon her, and once Jemima had finally found someone else who was able to support her and acknowledged who she was they were all removed.

Although this did not stop them from arriving at Jemima’s home unannounced one evening and trying to convince her not to remove them from the package and pleading with Jemima for money.

Following on from this low point Jemima has found a personal assistant, Rachel, who has previously worked with Mencap and who has the relevant qualifications in health and social care to fully support Jemima to live her life as who she is and between them they have sat down and created a care plan for Jemima, something that she never had previously and would be a useful tool for her when it comes to her care review.

Since I sat down with Jemima to write this article she has had some great news in taking the steps to become herself. With the help of a letter from her doctor she has now been able to get her name and gender marker changed on her passport, which in-turn has meant she has been able to get her bank details changed and now posses a debit card in her name and come late September will have been living as her chosen gender for two years with the hope of changing her birth certificate and begin the surgical process.

Although a lot still remains for Jemima to become who she wants to be she now has found the help and support systems she needs and is able to be herself each and everyday and spend regular time with her friends and even be able to attend her first Leicester pride festival as a transgender woman.

This is just an example of some of the issues we face in health and social care and ensuring the right person is in the right role. If you would like more information on Jemima, her condition and her progress she would be delighted for you to visit her blog at Jemimaisobelgrant.wordpress.com/ or if you would like more information on any of the topics covered please visit these websites,

https://www.nhs.uk/conditions/gender-dysphoria/

https://www.nhs.uk/conditions/complex-regional-pain-syndrome/

https://www.mindout.org.uk/

 

Written by Jack Wood – Training Coordinator

The Ability To Be You