Dear All

The Department of Health has circulated the following edited invitation from Professor the Lord Darzi of Denham to our organisation to take part in the NHS Next Stage Review, which will cover the NHS in England.
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Dear Colleague


NHS Next Stage Review: Invitation to National Stakeholder Forum

The NHS and its staff have made tremendous progress both locally and nationally over the last few years in meeting the aspirations of the NHS plan and the huge capacity building that followed.

The next part of our journey, through the NHS Next Stage Review, is to focus on clinical leadership, creating an evidence base to support the delivery of high quality models of care to improve the quality and safety of care, access to care, and tackle the inequalities in both health and health care.

The NHS Next Stage Review will identify a way forward for a 21st Century NHS, which is clinically driven, patient-centred and responsive to local communities.

We are embarking on an unprecedented engagement programme as part of the Review. We will engage, involve and solicit the views of patients, public, staff and stakeholders through a series of events.

A key part of the first stage of this programme is a National Stakeholder Forum on 12 September 2007 from 10.00am to 1.30pm at The Riverbank Park Plaza Hotel, London.

The aim of this event is to give you the opportunity to help shape the vision for the NHS over the next decade by making sure it focuses on the things that really matter to you and your members, to help meet both rising expectations and the challenges the NHS will face over time.

I am inviting you and a colleague to this event to hear more about our emerging thinking and to make your contribution to that. I hope that you will take this opportunity to get involved.

Registrations must be made in advance. I look forward to seeing you on the day.


ARA DARZI

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Background reading:
Shaping Health Care For The Next Decade
http://www.medicalnewstoday.com/articles/76037.php
NHS Next Stage Review
http://www.theyworkforyou.com/debates/?id=2007-07-04a.961.0&m=2014
NHS next stage review is an admission of failure, says Lamb
http://www.egovmonitor.com/node/12664


It is important for MCF to ensure that the voice of head and neck cancer patients gets heard in the plans for the NHS. I think more could be done to improve support for patients and carers. I would be grateful for your comments on what you feel is needed for NHS patients in general and H&N patients in particular. The collated views could be forwarded through MCF.

Best wishes

Vinod
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Dr Vinod K Joshi
Founder and Chief Executive
Mouth Cancer Foundation

Vinod,

A common problem that I myself experienced, is the feeling of abandonment after the treatmewnt for cancer has finished. During Radiotherapy we have daily hospital visits with any required medical backup available. After treatment finishes we are passed to the care of our GP, who has probably had no previous experience in this field. Could the NHS investigate some sort of intermediary care, i.e. a daily visit or phone call from a nurse.
About 2 weeks after my treatment ended was a particularly low patch for me. I spent about 6 weeks in bed, and didn't eat a thing in this period, all I could manage was a few sips of water. I lost about 3 stone after the treatment, as do most people. I visited my GP once during this time, but he couldn't really help. I think I then became too ill to go back to the doctors. It wasn't until my next consultants visit, when I suggested that I should start taking the steroids I had after chemo, that I was able to eat again. It wasn't until I started eating that I started healing. I think that regular contact with a nurse could have helped to prevent this situation.

Hi

From my point of view

When i went through surgery 9years ago everything was explained and followed up and the service and customer focus was excellent

This time i had radiation therapy and this is not a critisism of the staff

Explained to briefly
side effects not explained
not enough information about the treatment
not enough staff trained in how the treatment effects mouth cancer patients

just told to turn up for chemo was not sure at all what to expect

treatment rooms overflowing

not enough time spent with senior staff members

follow up after treatment

more moden methods of rt ie imrt

more or less to put up with side effects of rt medicines seem as if they have not got the budget to prescribe,im lucky ive a good gp

not enough beds in a proper oncologist or ent ward with trained staff i was on the heart ward

again its not the staff or hospital fault but the system nhs

Dave and Sue

I'd like to echo Jenni's point i think.
Cutting you off right after treatment isn't good.
I think if my side effects were managed more closely when treatment had finnished i wouldn't have dropped to 6 stone 10lb.

Also, catering a little better to young adults and our concerns. ie. fertility options etc.

Thanks

I totally agree with Jenni and Michelle. It was so worrying for my son to suddenly be left alone when treatment finished. Just a phone call a couple of days a week for a week or so after treatment would be better than nothing. You kind of feel safe and secure when you are going to the hospital regularly then all of a sudden there's nothing!!!! Just an appointment for six weeks later.

My son did have fertility discussed and the start date for his chemo was delayed so that he could have something put by. However this only came about because our macmillan nurse suggested it when his treatment was being planned by the team. Otherwise no-one would have mentioned it.

Nobody mentioned fertility issues to me during chemo, and I'm not that old yet. One radiographer did warn me that I musn't get pregnant during my course of radiotherapy though. I didn't like to tell him that I didn't really feel in the mood.

My dad has said exactly the same thin gonly last week.

They were discharged from daily RT visits to the hospital, to once a week, for 2 weeks only. The nurse came every other day to change the dressing on the burns on her neck and now they have cleared up, nobody comes at all.

My dad is left feeding mum on her machine, through her tube, and doesn't know how long this shoould go on, whether mum should be eating more or at all, etc. etc.

In fact, he felt so cut off that he rung the GP and asked to visit so, as he called it, they could "get back into the system".

They live in Bradford but the cancer treatment was in Leeds and I don't think the authorities talk to each other very effectively and there seems to be quite a bit of emphasis put on who refers mum to whom, presumably because of whose budget it comes out of. This isn't helpful when you feel so ill and the carer is 78 yrs old.

I think it is very common to feel somewhat cut off once treatment is finished. I was lucky in that on my final day of radiotherapy, I raised this point with the very helpful nutritionist who referred me to the MacMillan nurse at the local hospice. She visited me within the week and continued these visits for some time after my treatment finished. She was a really helpful source of support both in terms of practical problems to do with soreness in my mouth, eating etc but also for psychological and emotional support. It was she who picked up on my depression and even rang my GP (with my consent) to discuss this with her.

I believe your GP can also refer to the MacMillan nurses, although I suppose it depends a little on where you live as to whether there is someone available to come and visit. Hope this helps you, Winnie - perhaps it is worth suggesting this to the GP.

Kind regards
Sue