Enhancing the quality of care for patients in all care settings through partnership collaboration, advice and education

David's Story

My wife Joan had suffered from emphysema for years and so it was an awful blow to discover that she had lung cancer as well.  I had been off work looking after her and we were all getting pretty worn out and worried about the situation. My GP suggested referring Joan to Oakhaven Hospice at Lymington.  Joan was very clear that she did not want to go into the hospice as she wanted to be at home until the end.  Our GP reassured us that Oakhaven could still have an important role in helping us achieve this.   Claire from Oakhaven came out to see us at home and immediately put our minds at rest.  She spent a lot of time telling us what help was available and how Oakhaven could help us.  Explaining how the team worked together with our own GP and the community nursing service, Claire told us about Oakhaven at Home, which had only been set up recently.  Claire quickly became like a good friend to us all, she spent lots of time with Joan talking about the things which she didn't want to burden me with.  Even though they often talked about deep  and painful things, Joan still always looked forward to her visits.  Joan was also delighted when it was suggested that Sally, the Complementary Therapy Co-ordinator from Oakhaven might come out and give Joan a massage.  Sally came several times and gave Joan some really nice aromatherapy sessions which Joan loved.

Over the few months that Joan was known to Oakhaven she had various treatments at the hospital.  She started  a course of chemotherapy but it dragged her down terribly.  Later she had to have radiotherapy as well.  We always found our contact with the hospital difficult. Communication could be confusing and it was hard to know if anything they were offering was really helping Joan.  Claire was a great help throughout this.  She always spoke in straight, honest and simple language which we found really helpful.  I found it really beneficial  that Claire always had time to talk to me as well and would often ask me if there were things I wanted to ask that I might not have felt comfortable asking in front of Joan.  

As Joan became less well, Claire liaised closely with the district nursing team arranging all sorts of things like a special bed, pressure relieving mattress and a syringe driver in case Joan couldn't manage her drugs by mouth any more.  All the way along Claire advised on the medication that Joan needed to keep her comfortable and even arranged special supplement drinks on prescription from our GP.   When we needed more help the Oakhaven at Home team started to come out to us. They were able to come in as often as we needed them helping us with practical care and giving us support and advice.  The district nurses would ring every evening as well to see if there was anything we needed.

At the end one of the Oakhaven at Home nurses was with us.  We all sat together as Joan died peacefully.  The nurse was wonderful, talking us through the whole experience, telling us what to expect and what was happening.  I don't think I could have faced that alone.  After Joan had died she made her look lovely and called the doctor to come and carry out all the formalities.

Since Joan's death the hospice team have not forgotten me.  I have been back to the bereavement teas and met others who are going through the same thing.  I have also been able to have one to one counselling with Alison which has been really helpful.  I did not think I would need it but I soon found it helpful to talk.  I also saw Sally for some aromatherapy like Joan had enjoyed and I found that I was able to talk to Sally at the same time.

I can't imagine what would have happened to us if it weren't for Oakhaven.  I can't  praise them enough for what they did for Joan and our whole family.

Joan's daughter, Michelle, also told us how we had helped the whole family:

If Mum didn't like someone they soon knew it!  But she really liked everyone at Oakhaven - we all found them so easy to communicate with and felt like we could talk about anything, not just her illness.  They arranged everything we needed, even a special dry shampoo kit so that Mum could have her hair nice and clean, which was really important to her.

After Mum died Claire even gave us advice about how to support my children.  My little boy, aged eight, loved his Grandma and I wasn't sure if I should let him see Mum after she had died but Claire talked us through it all and it worked out really well. She was so helpful about that.  

It wasn't all sad either, Claire and the Oakhaven team helped us to have some really good days and often we had a good laugh with Mum even when she was so poorly.  That meant a lot to us all.