A Birmingham mum whose life was turned upside down when she was diagnosed with motor neurone disease is supporting a national campaign to extend hospice care to more families.
Fran Tierney, who receives support from John Taylor Hospice in Erdington, is backing the Open Up Hospice Care campaign.
The campaign has been launched this month by Hospice UK with John Taylor as a partner after it emerged that nationally one in four families who could benefit from hospice care are not able to access that support.
Fran’s life changed on 12 May 2011 when she was told she had motor neurone disease (MND). A progressive condition which leads to the muscles gradually weakening, MND has had a massive impact not just on Fran but on all those who love her.
“I was having back pains and had tests at the Queen Elizabeth Hospital in Birmingham. I was in complete shock when the consultant gave me the diagnosis as I’d never heard of MND before,” says Fran, aged 49, of Erdington.
“Before John Taylor Hospice became involved I was very scared and felt lost in a bewildering new way of life. I knew nothing about my condition and was too frightened to look on the internet for answers.”
But a few months after her diagnosis, Fran was put in touch with the team at Birmingham’s John Taylor Hospice. From that moment onwards, the hospice and its staff have been her point of access – helping her in every way they can.
“Anything and everything I have needed, from equipment to help me stay safe in my home and medical advice to spiritual and well-being comfort, have been offered by the staff at the hospice,” says Fran who is married to Martin and has three grown-up sons Louis, Daniel and George.
“On a practical level this has been invaluable – knowing I can text or email one team in one location and ask for help or advice without having to contact lots of different services, explaining who I am and what my condition is over and over again, which can be upsetting and annoying.
“The specialist nurse from the hospice has been a constant support for me and my family. She has explained everything for me and I know that I can ask her anything without feeling embarrassed.”
As Fran’s ability to speak lessened, the hospice’s occupational therapy team researched ways to help her continue communicating.
“My occupational therapist arranged for a new communication aid to be delivered for me. This was the latest version of software and camera incorporated in a tablet. She organised the different services (speech and language therapist, software development team and the access to communication and technology team) to come to my home and set me up on what has been an unbelievable piece of equipment. It has not only given me a voice but privacy and dignity, you just can’t put a price on that. Thank you doesn’t seem enough.”
Fran is also a regular member of John Taylor’s day hospice where she has made firm friends among staff, volunteers and other patients.
“The hospice organises a variety of different groups and organisations to come into the day hospice from theatre groups, musicians and choirs and artists,” she says. “Patients are welcome to participate if they want to. Some days I just want to read my Kindle and I’m able to do this without any fuss being made.
“And the hospice has opened up lots of opportunities for me. I was privileged enough to take part in a film exhibition in which participants were enabled to make their own films about their illness and what it has meant for them.”
Fran is close to all of her family including her three sisters and brother. Knowing John Taylor’s staff are on hand not just for her but also for her family has helped.
“The hospice have given my family piece of mind. They know that when I am at the day hospice I am happy and safe and when I have had a choking episode I have received the best care possible. The staff make time to get to know me and my family, so it is definitely not a one size fits all, it is truly personal.”
And Fran is keen for other families to benefit from hospice care.
“I honestly don’t know how I would have managed without the constant care, support and advice I have received from the hospice. Everything I have needed and more has been supplied or obtained by the staff at the hospice. They even gave me tickets to go and see Aston Villa Football Club play at home – and we won!
“People have said that the hospice is like a family but for me, you can’t always choose your family but you can choose your friends and that is how I feel about the staff in the hospice. They have seen me at my lowest and most scared and like real friends they have protected my family from this.”
John Taylor Hospice CEO Penny Venables said stories like Fran’s reveal how specialist palliative and end of life care can make all the difference.
“Fran and the many other patients families we support tell us how our expert care helps them with nursing care and pain management, practical help and emotional support.
“But we know there are other families nationally and in Birmingham who could benefit from hospice care who are not currently accessing that help. At John Taylor our vision is a compassionate and dignified death for all and that is why we are partnering Hospice UK for Open Up Hospice Care.”