Living With Mesothelioma -My Diary- My Meeting was very informative today so just a peak at what I do


It was a case off get my act together and go to My Cancer Kent and Medway Network Transition Team  East Kent Partnership Locality Group. What a mouth full.

We tidied up and Ray walked Louis as I showered and dressed. We set off but what a cold wet day. Park and Ride to the hospital and we made it.

One of the ladies had made the most pretty of cup cakes. They were carrot cake with little chocolate orange carrots  on top of the cream icing.

We sat down and got on reading through the last meetings minutes , we agreed them.

Because I was having Chemo I had missed a Libary  tour it covered all of Kents medical history  and went way back.

We have a new mobile chemotherapy unit that can treat 12 patients a day. It has everything even a lift from the pavement to the door for wheelchairs -everything except staff to run it, they have got to take the nurses’s from the chemo ward. They have been training lots of staff up and I thought it was overstaffed when I went to chemo.  How wrong can you be and I know why. The unit will go to Rural places where it is hard to get transport  to hospital but they will have to go to the hospital to give bloods so I can see there are problems to iron out yet. One guy bought up the problem of chemos that have to be made just as a patient needs them -I met up with that if you remember when I was on the trial. I had to phone ahead when I was on the motorway so they would them make the trial drug up.

Then they talked about a new thing Healthwatch Kent http://www.healthwatchkent.co.uk/ and there is a UK http://www.healthwatch.co.uk/

It was explained  this will be run by volunteers . I have used Macmillan through all my journey I dont see me changing. Time will tell if they are good for the   Patient.

They have a lot of events planned so I will watch their web sites.

The Head of Equality in East Kent spoke to us about and it was bought up about A&E are swamped with the problem of drinking. We do know this but they have got to find a way to relieve A&E as it is being used for minor things that could be seen by a GP. I said about the experience when I had my fall as it never entered my head to go to A&E. I used Estuary View where a nurse was quiet capable to wash my wounds and take glass and grit out and glue me up.

He agreed but that is a special walk in hospital. I said  there are many group practices with  GP’s and treatment rooms so it could be done. —note was made !!

You can see that through these meetings with the new NHS we  cover a even wider range of NHS. Our Lung Dog meetings are taking place but they have cancelled twice this month. They are trying to find free places to hold them as they always had that option but the new NHS is saying we have to pay for meeting rooms. We are a voluntary Group and as such we have no funds.

It has amazed me how the NHS runs on charity money, like Macmillan, cancer research, and all the other funds for all the illness’s.

But they do think highly of the work we do  within our group.

The next report was about Chronic pain which we are very interested in. One point was raised and I want to pass on to you all It was raised by my colleague. When you go into hospital in an emergency have all your medication written out . A list even if you put it on your computer then if you go in at a weekend  they will know what you are allowed otherwise they can only give you paracetamol.  I think this is because pharmacy wont be open. I will pursue this further I promise.

I raised the problem of the Gold Standard Framework not being used by all GP’s under the new NHS as a GP has mentioned to a friend  there is to much Paperwork involved.

http://www.goldstandardsframework.org.uk/

It was said that they will carry this to next time as it highlights  the question who will be making sure this  is carried out.

We were also given other links http://www.mycancertreatment.nhs.uk/

http://www.drfosterhealth.co.uk/

I also bought up about Centralising information and make available to all Doctors . All the treatment they can use, and I explained what happened to me where I had to find my own Chemo,

All the trials going , as they seem to keep it to themselves and we have a hard job to find what is going on outside of our area.

That was it we all said goodbye and chatted as we walked to the front main door.

We called in at the shopping estate and Ray still cant get what he wants it is hard our way to get computer bits so he is going on line to buy them, where he should have gone in the first place.

So I popped in and topped up the freezer for the weekend.

We were so pleased to get home, have dinner and relax.

 

 

2 thoughts on “Living With Mesothelioma -My Diary- My Meeting was very informative today so just a peak at what I do

  1. Thanks Mavis, all the info really useful, is it just meor does it seems as though all the services are getting more not less disjointed. Plus everything I read makes me think never go to hospital at the weekend.

  2. That is the answer Amanda –hospital at the weekends seem to be light on Medical staff -you are right that it is becoming very disjointed and so hard for them as they stick to budgets just as they have more patients to look after. But it is early days in the new NHS so only time will tell I do find the people there are passionate about the NHS so loyalty does continue xxx

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