When his wife Maria was diagnosed with terminal cancer Jon Khan says they struggled to make people understand the pain and anguish she was going through…
Even with help from GPs and some cancer doctors, Maria seemed to suffer needlessly and Jon despaired that her final weeks would be unbearable. Then, the couple visited the Palliative team at Tameside Hospital and, in Jon’s words, “it was as though the clouds parted and someone understood, someone got it.”
Maria was prescribed new medicines after specialist doctors and nurses talked to her about her distress and the pain was controlled and she felt better able to cope. Sadly, she died in Willow Wood Hospice in Ashton under Lyne in September - exactly two years after her rectal cancer was diagnosed. She was just 36. But her final weeks were filled with joy visiting family and friends and spending time with her much loved husband.
This was all possible because of a pioneering integrated Palliative service developed earlier this year in Tameside, which has seen the number of referrals double, and involves the community, the local hospice and the hospital working closely together for the good of terminally ill patients to reduce the acute and debilitating pain that many people experience because of the nature of the disease.
Dr Mariam George, Consultant in Palliative Medicine in the Macmillan Unit at Tameside Hospital believes this collaborative hollistic approach can help to improve the quality of life for patients who are living with any life-limiting illness, as well as carers and those close to them.
She explains: “Our aim is to control pain and other symptoms, and help patients, their families and carers cope with the emotional upset and social problems relating to their illness. When life is short everything is put into sharp focus, and we want to make sure that we can do all we can to make every moment the best they can be. We meet formally once a week with our community and hospice colleagues and liaise with each other regularly in order to make that happen.”
Jon, who is an IT administrator and lives in Ashton says both he and Maria accepted that due to the nature of her disease she would never be totally pain free. But, with pain control she was able to “re-join the world” and spend her last weeks with those who loved her the most.
He added: “I believe the role of palliative care and the support it provides is crucial. Unlike most other medical fields palliative care fits all criteria for patients with severe pain complaints. However the name palliative is almost synonymous with end of life treatment. Even if you Google palliative care you will see that “end of life care” is attached to this name. I believe they should be known as pain care specialists. Palliative care does so much more than the name suggests. The palliative doctors and nurses sit and listen and actually understand the nature of pain and more than anyone else can sympathise with those needing treatment for acute and sometimes debilitating pain. The team have been there seven days a week and even talking to us at home, treating everything as a priority. Not once have we thought ourselves a number in a long line, able to contact the palliative team and if we were not able to raise someone, someone would come back to us.”
Dr. George highlights the existing generalised misconception among many healthcare professionals and the public that Palliative care is mainly associated with the last days of life. “Over the years, Palliative Medicine as a specialty has evolved to include management of different symptoms earlier on, not just in cancer, but also in conditions such as heart failure and chronic lung conditions.”
Karen James, Chief Executive at Tameside Hospital says the success of the service is down to the expertise and professionalism of Dr George and her team. “They demonstrate all we stand for here - kindness, compassion and the belief that everyone matters. I believe this pioneering new integrated care approach will become the way forward for all terminally ill patients in the future.”
Now Jon, who is 32, is preparing to spend the rest of his life without the love of his life, He explains: “Christmas was a big hurdle for me to overcome as Maria loved everything about this time of year. She’d get really excited planning surprises for family and friends. I thought we’d have dozens of Christmases and New Years together but it wasn’t to be. I feel like I’ve been robbed of the wonderful future we could have had, but I don’t regret a single moment we shared. She was such a special person, and I was so lucky to have known her and loved her. And I’m just so grateful that the palliative medicine team were there for us when we needed them the most.”