Press release
Summary Care Records help communicate the wishes of terminally ill patients
As so many clinicians are involved in the care of a terminally ill patient, it is often difficult to communicate the wishes of these patients particularly if a clinician is called in an emergency or out of hours situation. To improve this situation in Bury, local GPs are working with patients to add these important details to a patient’s Summary Care Record.
‘Dying Matters’ awareness week, a national campaign which is taking place between 15th and 21st March, is aiming to encourage people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with their friends, family and loved ones.
Patients in Bury who have a Summary Care Record can ask their GP to add their wishes regarding end of life care to their Record. And this is exactly what Mrs Phillips, 60, from Bury, has decided to do.
Mrs Phillips has been terminally ill with cancer for the last eight years. She currently has tumours in her neck and collarbone which are ‘capped’ to a level where treatment is non-urgent. However she is being regularly monitored and the rest from treatment enables her to have some quality of life.
Mrs Phillips has a Summary Care Record and has added a ‘do not resuscitate request’ to her Record. Mrs Phillips got in touch with her GP to add her end of life wishes when she realised that she could add this extra information.
Talking about Summary Care Records in general, Mrs Phillips said:
“I’ve often been rushed to hospital. Sometimes I can’t breathe and I’ve been too ill to tell the people in A&E everything. You feel desperate. I can’t remember everything. How long I’ve been on such and such drug. I’ve been on so many. About 14 lots of tablets for different things. Now they can find all of that information on a Summary Care Record. It’s brilliant, especially if they need to know something important straight away. Everyone needs one.”
Mrs Phillips added: “It’s very important for people like me to add information to the Summary Care Record. There’s a kind of relief in knowing that I’ve made my wishes known. I’ve consulted my family. I’ve talked about it with my doctor and at the hospice where I’ve been treated.”
“I’ve made this decision in a quiet mind, in an informed mind. It’s my choice. I’ve had to be very hard. I can’t afford to consider everybody else’s feelings above making the right decision for me. I’ve been very ill. People can look after me and love me, but they are, sadly, bystanders when I’m up all night being sick after having chemo and my hair is falling out.”
Dr Ajay Kotegaonkar, is the lead GP for End of Life care in the area and during consultations with his terminally ill patients, discusses if they would like information such as their carer’s contact details, wishes regarding resuscitation and their preferred place of care to be added onto their Summary Care Record.
This can then be accessed by the appropriate clinicians who treat them away from their GP surgery. He said: “By making a patient’s wishes clear on their Summary Care Record, patients can be treated according to their own wishes no matter who is caring for them. Current figures show that nationally around 40% of patients with terminal illnesses die in hospital, many of whom, with the appropriate level of support, would have preferred to stay in their own homes. Our long term aim is to reduce this by 10% in Bury.”
Dr Rob Jeeves, Clinical Lead for Summary Care Record, NHS Bury added:
Urgent care clinicians are already using Summary Care Records in Bury. GPs have the opportunity to help their colleagues by providing them with vital information about their end of life wishes and so ensure that their patients receive optimal care at a difficult time.”
Lynn Hopwood, Specialist Palliative Care Nurse from Community Services Bury added: “The need for effective communication, coordination and continuity of care is essential for palliative care patients. Summary Care Records can help ensure that all practitioners involved in care know the patient's wishes and adhere to these.”
ENDS
Date: 15 March 2010
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