D’s story by C and V
D, our son, had been training at the British School of Osteopathic Medicine for two years when he was diagnosed with a gastro-intestinal stromal tumour (GIST). He was only 27. Initially, it was very difficult for him to accept because he was a fit, active young man, passionate about anatomy and physiology and he took a keen interest in his own health and nutrition.
Following discharge from hospital in May 2005, D came to live with us. The Midhurst Macmillan Specialist Palliative Care Service was alerted and consultant Peter Hargreaves referred D to GIST specialists at the Royal Marsden Hospital. In the meantime, the service arranged blood transfusions and pain relief.
The Marsden prescribed a new drug, Glivec, which reduced the size of the tumour. D grew stronger and in 2006 he felt he could live independently again. The Midhurst Macmillan Specialist Palliative Care Service helped him to apply for the benefits to which he was entitled and he moved into a house about a mile from us. By February 2008 the Glivec stopped working. We were told D probably had about six months but he was determined to fight. He exercised whenever he felt well enough, which gave him both physical and mental strength.
When all other approved drugs had been tried, D took part in trials for the Royal Marsden. They did not help, but D felt he was contributing to research that might help others. In April 2009, D’s condition was worsening. We visited a hospice with him, but he wanted to remain as independent as possible. We re-established contact with the Midhurst Macmillan Specialist Palliative Care Service, which provided all the care and support needed not only by D, but also by us, as parents, brother and sisters.
It meant that during the final weeks of D’s life we were able to be with him every day. The nurses visited several times a day to administer pain relief and provide practical and emotional support; they also provided night-time care. They were like a beacon of light in our lives.
As D saw it, the Midhurst Macmillan Specialist Palliative Care Service enabled him to retain his dignity and independence throughout, by living – and dying – in his own home.
Mr E’s story (A service perspective)
Mr E, 92, was referred to the Midhurst Macmillan Service towards the end of January 2013 by his local acute hospital, where he had been an inpatient for 12 weeks with repeated chest infections and end-stage cardiac disease. Mr E’s wife had been cared for by our service about four years before, when we supported her to die at home. Mr and Mrs E had no children – their next of kin were a niece and her son, their great-nephew.
Mr E had expressed a wish to die at home and following a case conference at the hospital it was decided that he would be offered no further courses of intravenous antibiotics and would be transferred home with a continuing care package. Because Mr E lived on his own, his family contracted with a care agency for a 24-hour live-in carer. A hospital bed and other equipment were delivered to his home before his discharge.
Mr E was eligible for continuing care funding for additional care. This took the form of two carers four times a day. Other services involved in his care included the community nursing service, the GP and the Midhurst Macmillan Service. Because Mr E was not able to co-ordinate all the care himself it was important that all the services communicated effectively between themselves and with Mr E’s great-nephew. The district nurses left notes in the home of Mr E after each visit and we wrote into these notes to help facilitate effective communication.
On the first visit following his discharge home his clinical nurse specialist found him in bed awake and obviously able to respond to questions though he became easily tired. He had no pain at rest but did have pain when he was moved and he was moved by the carers every time they visited to help prevent pressure injuries. His main carer reported that he was drinking a small amount of fluids but was finding solid food difficult to swallow. Our role in monitoring and advising on pain and symptom control was explained to his live-in carer and our contact numbers left with her. A telephone call was made to his great-nephew to let him know we had visited.
We made regular visits to Mr E during the next three weeks, during which time he required changes to his pain control, which was mainly via a dermal patch. We spoke to the district nurses regularly and provided a night sit so that his carer could rest.
Mr E became increasingly unable to tolerate large amounts of fluid but he was able to drink small amounts. He gradually declined over a period of three weeks and received medication via a syringe driver for the last 48 hours of his life. He died as he wanted, in his own home with his remaining family present.
The main points of care from the service were communication between all services involved, assessment of need for pain and symptom control, advising on the most effective methods of drug delivery, and to support non-medical carers and Mr E’s family with an explanation of the importance of their role.
See more of our work on co-ordinated care
- Read the full case study on the Midhurst Macmillan Service
- Watch our video to find out more about Midhurst Macmillan's approach to care co-ordination
- View our organogram showing the Midhurst Macmillan care planning/co-ordination process
- Find out more about the project: Co-ordinated care for people with complex chronic conditions