Arthur's story

“Pam and I feel more relaxed knowing that the Iain Rennie nurses are there 24/7 and are pleased that we have a total care plan in place."

Arthur Cotton (74), shown here with his Rennie Grove Hospice at Home nurse, was diagnosed with Motor Neurone Disease (MND) at the end of 2011. MND is a rare, progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

MND can affect how you walk, talk, eat, drink and breathe and it’s terminal, with 50% of people dying within three years.

After the initial shock of his diagnosis Arthur, a former company director, was keen to find out the bottom line. He wanted to know what the disease would really mean for him so he could plan and prepare for it.

The key to achieving the best quality of life with the disease lies in managing the symptoms and in order to help him do this, Arthur was referred to 13 different healthcare professionals in 8 different centres. Arthur considers himself very lucky that the pressure of dealing with these difference agencies was largely taken away by a Specialist Neurological Co-ordinator, Liz Garrood, from the Hertfordshire Community NHS Trust. Liz has helped Arthur engage with the right organisations to put proper plans in place for his current needs, his future care and for his death.

One thing that Arthur was sure about right from the beginning was that he wanted to stay at home throughout his illness and to be able to die there, if possible. So in 2011, Arthur was referred to the Iain Rennie Hospice at Home service (part of Rennie Grove Hospice Care) whose aim is to allow their patients to die at home if that is their wish.

Arthur said: “I saw my mother-in-law die in hospital and that was sad and impersonal. But I saw my father die at home and that was so peaceful and respectful to him. In your own home, that’s the best place to go. And that’s what I hope is going to happen to me.

“Being able to talk to the Iain Rennie nurses from a relatively early stage has been immensely reassuring for me and my wife, Pam. We have built up a lovely bond with the nurses, especially Barbara, and trust that they will not only help us through the difficult times ahead, but that they will help ensure that our plans are adhered to as closely as possible right to the end.”

Clinical Nurse Specialist at Rennie Grove, Barbara Van Brummen commented:

“So far we have only been visiting Arthur about once a month and most of our work with him has been based around recording his wishes and planning ahead. We all want to avoid unnecessary hospital admissions and through collaborative working with the other agencies involved with his care, we can make sure he has the equipment and medication he might need readily available at home so that he doesn’t need to be taken into hospital.”
Rennie Grove Hospice Care provides a 24 hour responsive nursing service which means that if Arthur develops distressing symptoms that he and Pam are worried about, they call the Iain Rennie Nurses and someone will visit, no matter what time of the day or night.

Barbara added: “The early referral has been really beneficial both for us and for Arthur and Pam. We know each other now and we know how Arthur wants to be cared for and have been able to plan for this accordingly. We’ve also been able to explain to them how our service works so they know that if they need help or reassurance, we can be there for them whether it’s day or night.”

Arthur said: “When I was first diagnosed I was quite resistant to taking the help on offer but as my illness has progressed I have realised the huge benefits of seeking this help and understanding early on and I would really encourage anyone in a similar position not to hold back. The emotional stress of a progressive disease like MND is immense and as time goes on and I can do less and less, it is difficult to accept but talking to people does really help.

“Pam and I feel more relaxed knowing that the Iain Rennie nurses are there 24/7 and are pleased that we have a total care plan in place. Barbara works very closely with my co-ordinator so all the care I receive from the NHS is known to Iain Rennie and vice versa. Knowing that everyone is singing from the same hymn sheet has really helped me cope with the emotional stress. I consider myself to be very fortunate in having so many marvellous people looking after me.”

September 2013