Blindness

I'm Sergeant Dave Tuttle. I'm the Community Engagement and Faith Officer for Hounslow Police. So, obviously part of my role is to go into all the faith premises, the gurdwaras, the temples, the churches, the mosques and actually engage with our faith community here in Hounslow and to understand what their needs are and how the police service can support them. Yeah, I've got a number of experiences about, as a patient for example, one of them is, I've got a son who's 15 who's got a severe epilepsy, he goes into hospital quite frequently, he's in a special needs school, but the reason I'm talking about him is because the issues around his needs and his care over the years as a, from a neurological disorder point of view, that he, unfortunately the service has not been what we expected and unfortunately we've moved from hospital to hospital to get the care that he needs. So it's very up and down is the care as a patient he receives. It depends on the budgets and unfortunately the child commissioning group which he's supposed to get money from doesn't fund any of his care at the moment even though he's got a life threatening illness. Unexpected issues are just some of the responses from the NHS and local managers about his care. When he went to the epilepsy school, his residential one into Friday, we thought his local GP would continue to be his local GP until we had a letter in the post saying that he does no longer have a GP in the local area. We would have to register him every week as a temporary patient. Now that seemed crazy because he's been without surgery for 15 years. I think the advice is to keep being strong about the needs of you or your patient. It's to basically explain to the NHS what the needs are. Don't assume that the clinicians know what the needs are, make sure that they are aware of the needs and the help that's required. So you really need to keep banging on the door to get the signposted help that is needed. So don't make any assumptions about the level of the knowledge of clinicians. As a carer and as a parent it's important to keep raising your voice. For example my son doesn't speak very much so I'm raising his voice on his behalf.