What helps and what doesn't

[valeriel]

Just read all replies to Molly Os post and found everyones comments so interesting. So I thought why don't we do our own bit of research. If you have time could you pleade let me know what our healthcare professionals do that we find helpful in coping with cancer and what do we think they could do better. Finance may be an issue but I was thinking more on the lines of their individual professional practice. I am happy to pull your responses together and if anyone has any ideas who we might share it with please let me know. Thinking of you all as always. Val x

[Hidden]

Hi Valerie, This research is a brilliant idea but I am just wondering does your post refer to Ovacome or Ovacare members or both

[Whippit]

That's a great idea for a conversation Val.

I've just attended the first meeting of a patient group that is involved in consultations to transform cancer services in SE Wales.

Your question is interesting. We have an extraordinarily cash-strapped NHS in Wales and one that delivers different services according to which health board area patients live. It's a vey uneven provision.

What struck me about the discussion with patients is that the oncology service in the NHS in SE Wales is insular and wants to do everything itself. I mentioned the third sector several times during the meeting saying how much they do to support patients and how it would be good if they could work together and in an integrated fashion to avoid duplication and to free up the oncology service to do what it's paid for - to treat patients.

I mentioned how Target Ovarian Cancer run 'Ask the Expert' Days and how much these had helped to put my disease into context and lift me out of a focus on my own treatment. Their response - to set up their own Ask the Expert Days. It was strange to get a feeling of mistrust between the two sectors.

Another discussion we had was how different patients wanted different things from the service at particular points in their treatment. Patients varied from one gentleman who wanted a lot of time with his oncologist and he thought patients wanted advice on nutrition and exercise. At the other end of the spectrum were the patients who were comfortable with their disease and whilst they were feeling like that they wanted to avoid trips to hospital and would welcome a telephone conversation with their clinician rather than travelling in and spending 2 hours or more in a waiting room for a 10 minute appointment. That group of patients also felt they could take responsibility for letting the hospital know when they needed help.

If the hospitals could stop treating us in a 'one size fits all' approach, they would free up time to concentrate on the patients like the gentleman I mentioned who needed more time to help him cope.

We even talked about colour-coding patients' files to differentiate between the way patients wanted to access the service. I did point out though that for patients who are generally quite independent if they do ring the hospital for advice the hospital needs to act swiftly and not wait a day or two to ring them back.

I'm looking forward to other posts. The Velindre Transforming Cancer Services could set up a Health Unlocked community of their own. I might suggest it. xx Annie

[valeriel in reply to Whippit]

Hi Annie

Thanks for your reply. Don't some good ideas emerge when you ask patients what they need in the light of their experience. I know you personally have been very active in Wales and I don't know of any such activity in England. Do you think there is any mileage in getting ideas together and writing an article for publication? If we did, I wonder where it might reach the right eyes and ears. Val x

[Whippit in reply to valeriel]

Oh that's so funny Valerie. The reason I organised a conference in Wales is because I experienced so much patient liaison in England and nobody was doing anything in Wales.

In England Macmillan UK organise the Britain Against Cancer Conference in Westminster Hall in about October every year, and shortly afterwards Macmillan Scotland organise their all sector event. We have nothing of the sort in Wales. We have a challenging geography to put together an all-Wales event but the Government like to keep us divided divided and not talk to one another because they hope to hide the fact that patients in Wales are treated differently according to which health board manages their care. I don't say these things without authority. It is commonly acknowledged by the NHS at policy meetings.

If anyone wants to get involved in patient consultations it's worth putting yourselves forward with Target Ovarian Cancer. They are the only UK-wide charity supporting women with ovarian cancer and work actively in all areas with government and the NHS.

I put myself on their books 4 years ago, and they've referred me to all sorts of organisations and forums which listen to the patient voice. I ended up serving on the NHS Pan-London Cancer Users Group for 3 years and this group feeds into the commissioning boards for the whole of London. What is great about working alongside a charity is that they will have so much knowledge and broader experience of what is going on, and they will help train and mentor their volunteers. They've been wonderful to me, and very often if I've had a television or radio interview I've phoned them beforehand to ensure I convey the right message. It's avoided getting into the public gaze and then saying things that the experts can ignore or dismiss as inaccurate because a patient often has a limited understanding of issues.

I know Ovacome also have a delegation to Westminster and I joined that once which felt very empowering, and Ovarian Cancer Action are looking to extend their remit to the regions. Ruth Grigg at Ovacome co-ordinates all their volunteering activity.

If anyone wants to hear how to get involved as patients I'd be more than happy to share my story.

xx Annie

[valeriel in reply to Whippit]

Well would you know it!!! I guess it reflects how hard it is to find out what is going on both locally and nationally. Thank goodness we have people like you. I will contact Target Ovarian Cancer and Ruth at Ovacome. In the meantime I shall see what replies I get and talk to people I know who have experiences to share. keep up the good work Annie and let me know if I can help. Love Val x

[Whippit in reply to valeriel]

Well, those two actions you've just mentioned are an amazing help to all women with ovarian cancer and all who are affected by it.

Let me know how you get on. It's a very strange experience stepping into the official world of ovarian cancer. It takes you to surprising places and you hear surprising things!

Good luck - you rock! xxx

[valeriel in reply to Whippit]

I will give it a go. My problem is that I am more interested in the human side of the provision, rather than the politics but I guess they are interrelated and maybe I will get into that too. Will keep in touch and thank you for your help and encouragement. One day maybe we will meet up. I hope so. Val x

[valeriel]

Hi Suzuki

Thanks for your replay. Initially I just thought of the Health Unlocked community but I have a friends who have experienced treatment for breast and colon cancer mainly and they have views too Maybe I need to stop and think this through a bit more. I wonder if anyone at Cancer Research UK would be interested or maybe there is research funding and ideas elsewhere. Happy to have any ideas about what would help get our views into mainly professional forums. Val x

[Hidden in reply to valeriel]

We have a National Cancer Strategdy forum over here, but I am not sure how patients access it if at all. There is a patient Advocacy group here as well and it does help you sort some problems you may have with hospitals. I think the very idea of Cancer Patients going to A and E and be open to all kinds of cross infection is horrenduous, yet it happens both in Ireland and UK. You have given me food for thought definitely. Patient care is very important, We have the Irish Cancer Society who promote Cancer Awareness but they do very little for Ovarian Cancer Patients. My efforts to ask them for more inclusion has fallen on deaf ears. SOCKS Ireland also promote the education of general practitions to the symptoms of Ovarian Cancer they do this totally voluntarily. So for instance they will post out information leaflets and then you drop them into local surgeries and your gp practice etc. Definitely all cancers should have equality, there are also cancers such as Leukaemias and Childrens Cancers which you hear very little about.

[LesleyGreengran]

I fond it useful if they have time to talk and explain medication and other treatment properly. But if course they are often rushing about with little time to spare . They answer questions well but I don't always know what to ask.

[IrishMollyO]

Hi Val

I was very surprised at the response to my post. I have been on this site for less than a year and I don't post very often . I try to be helpful where I feel my experience is useful. I am usually posting when my head is about to explode with stress ! I always get such reassurance from all you lovely ladies and always thought that your medical teams were the tops at being empathetic and explaining everything to you . Actually I am often quite envious at the depth of knowledge shown by so many women which I took to mean that they were on top of their particular situation.

I also usually post on this site as it has such a wide audience and for instance I will always get a reply from a PPC patient as it is so rare here in Ireland. I follow all of you and read every post. I am so impressed by your active role Annie in keeping these diseases on the forefront of public and government consciousness.

In Ireland we have the wonderful Ovacare and they also raise awareness . In fact Suzuki I saw a post from Sharon in Ovacare asking for topics we would like to address . I intend to put my thinking cap on at the weekend and reply to her. Yestedays headlines on World Cancer Day has concentrated my mind.

I suppose in an ideal world every single patient will get equal treatment and not a one size fits all as someone commented in their reply to me. I also firmly believe that there should be a pooling of resources and knowledge. If for instance you are diagnosed in a hospital that has limited expertise with a particular form of cancer then you should be advised to seek a second opinion in a medical facility that does have that expertise. I know for instance that in hospitals here X Rays are often sent elsewhere to read. All sent and replied to by computer which is the wonder of this modern age and I am sure the same can be done with scans. Or maybe they are !

P. S . I am still waiting for a reply to my plea for a private appointment

XXX

[valeriel]

Thanks Molly for taking time to let me know what happens in Ireland. I am getting more interested now in the fact that there is a lot going on but it isn't publicised or good practice shared. I do hope you get your private appointment sorted soon. LOve Val x