I cannot agree more with Graham Falkner's comments. The findings of their survey match my experience completely. After 40 years of living with someone with complex epilepsy I still find myself jumping internally everytime I hear a strange noise close by (it might be a seizure starting which I need to respond to!). My daughter now lives in residential care where they understand living with the condition but epilepsy is still part of me too.

I suffered a nervous breakdown fifteen years ago, tried to get help and understanding etc but apart from family did not find anyone else who understood the 24x7 stress that living with someone with complex epilepsy causes. I do not think that I really understood what was happening either. I just thought it was my fault - I certainly never thought of myself as a 'carer'. When eventually things came to a head a few years ago, social care still did not comprehend what stress living long-term with someone with a complex medical condition puts on a family. In the end, being now on my own, I had to refuse to have my daughter living with me any more (with her present) before they took any action at all. You can only imagine what effect that had on my relationship with my daughter who I love dearly and who I now visit as much as possible. I do so hope that this kind of story becomes a thing of the past but I will not hold my breath!

Thank you Judith for powerfully and honestly sharing your personal/family experience of living with epilepsy and the lasting impact it can have on all concerned. We’re very grateful for your interest in the VODG blog.

As a Private Domiciliary Care Company, that has chosen not to be boxed in the list of the Local Authorities Preferred Providers , we have the taken the luxurious decision of not providing 15 minute calls, as we consider them nothing but bad practise! How can anyone profess to be acting in the best interest of the Service User when expecting a Support Worker to visit, pop a meal in the microwave, make a drink, tidy a kitchen area after using it, check the well being of their Service User and then write an accurate record of their visit? On the other hand, when providing a 30 minute visit, our Team Members cook a meal of fresh meat and vegetables, make a drink, chat with their Service Users, tidy round and know that they have left someone secure and feeling cared for! No Comparison!

15 minute calls should be abolished along with the insistence that our elderly population are alright with the provision of just a pop in service, a lack of nutritional dietary provision and a lack of dignity. I say again Bad practise!

We have also had the first hand experience of being told by a prospective Service User when assessing their needs for self direct support, that the LA has told them they cannot use our Company, as we are not on the preferred list, and are too expensive! This was soon rescinded by them when I emailed the Commissioning and procurement officer with information from their own website, and copied in our local CQC Inspector! It cannot be denied that an overwhelming desire of not wanting to conform to the LA's scheme of care provision by these preferred providers has left us out in the cold in our local area, but if providing quality care by team members that are paid well, listened to and trained extensively is our outcome, then we will carry on regardless!