Today we’re sharing Stephen Lock’s story.
Stephen very kindly agreed to let us share his family’s experiences to help us talk about the importance of access to expert 24 hour support, and to campaign about how important this is to people who are dying, their family and their carers. He also spoke at the Parliamentary launch of our campaign.
As part of our Dying doesn’t work 9 to 5 campaign, we’ve found that there are huge gaps in dedicated and immediately available 24/7 expert advice, emotional support and coordination for people who are dying and their carers. Stephen’s story highlights just how important this type of support is, and how it can make a huge difference at such a difficult time.
Stephen’s wife Bea was diagnosed with breast cancer in 2013. Following a year of surgery, chemotherapy and radiotherapy Bea was given the all clear at her one year follow-up in February 2014.
A visit to the GP
In May 2014, whilst looking after their children and studying for her Masters degree in Law, Bea visited her GP due to a slight loss of appetite. Following on from an ultrasound scan which didn’t show there to be a problem, a CT scan was conducted and the news was bad.
Bea’s breast cancer had returned to her liver and it was terminal. The cancer was progressing quickly and nothing could be done and Bea was too ill by this stage to have chemotherapy.
Soon after receiving the news that Bea’s illness was terminal, a palliative care nurse asked Bea "what is important to you?" Bea responded, "I want this to be as good as possible for my children and I want to die at home."
Making Bea’s wishes possible
From this moment Stephen describes how a ‘well drilled people’s army went into action to make Bea’s wishes possible.’ A coordinated team of medical staff and support service worked to prepare for Bea’s homecoming. Nurses worked around the clock to look after Bea and improve her physical condition so that she was in a fit state to return home as well as providing Stephen with support and advice.
When Stephen and Bea made the transition from hospital to home, Stephen couldn’t believe the transformation in their home. Equipment had been set up to ensure they could cope, but that was still that all important ‘homely’ feel.
Once at home the Sue Ryder Manorlands Hospice at Home Team visited as and when requested by Stephen. Stephen also kept the Gold Line number in his pocket as a ‘one stop shop for any questions. Stephen was able to seek advice around the clock, on anything from when to change Bea’s drug dosage to how to get an out-of-hours GP to what to expect when someone dies.
Dignity, care, compassion
The care that Stephen, Bea and the family received is described by Stephen as coordinated – “there must have been at least four services involved in looking after this, although it was so seamless, you would have never known” – and he also says that at all times ‘there was dignity, care and compassion.’
Sadly Bea passed away just three weeks after being diagnosed with terminal cancer, however Stephen is able to describe his memories as ‘happysad’ and says that the trauma of losing his wife is ‘far less than it could have been’ due to the care and support that he and the family received.
The 24 hour expert support Stephen and his family received during this difficult time made a very difficult time just that little bit easier. This type of support, however, is not accessible everywhere.
92% of areas in England lack comprehensive round the clock services for the dying, their carers and families. People who are dying, their carers and families are often left alone, distressed and suffering without anywhere immediate and appropriate to turn to outside of 9-5 working hours.
This needs to change – and you can help everyone who needs it have the expert support Stephen had. Sign our petition today to help ensure the lack of comprehensive 24/7 expert support services are urgently addressed.