[eveParticipant]

Hi Everyone

An MP asked questions in parliament this week concerning treatment of cancer patients,consultant involvement plus NiCE involvement in making decisions about the treatment of patients.!!!

He was concerned about the fact that if consultants decided that the treatments laid down by NICE was not the correct treatment for a particular patient,and the said consultant decided a different treatment was the better treatment for a patient. The consultant would be considered to be doing harm to a patient,and leave themselves in a vulnerable position of being sued!!!

It does explain why consultants will not deviate from the standered protocol .Myelom for example
There are three standered treatments,these are used first!!!
The only lee way is if a patient goes on Trials.which are not always available in certain parts of the country.

Slims own consultant explained it in a simple form with out blaming the system, but he did say a few years ago consultant were able to choose treatments they considered suitable for the patient,this changed with NICE !!!!

The question must be have we gone backward in treating Myeloma Patients,????

When a patient has used up all three options in a short space of time plus high does chemo in a SCT,one has to wonder about how much good would be achieved from new drugs,!!!!

When MP are starting to ask questions concerning NICE and the fact that if consultants leave themselves open to being accused of doing harm to a patient because they have not followed the protocol decided by NICE, it,s wrong!!!!

Eve

[dickbParticipant]

What a sad situation to be in for the consultant let alone the patient, I would of thought the majority of people go into the medical profession because of a desire to care and look after others. It's a mad system that then makes these same people question the level of care they should give. Who can benefit from it? Resources are finite but surely giving he right care at the start rather then going down a specific route that will not suit every individual may put a greater strain on these resources. This is especially so when research shows that MM is in the increase when other cancers are decreasing.

[eveParticipant]

Hi Dick

It's not just sad,it's wrong!!

The fact is the treatments involved are excellent plus the best for most Myeloma patients. New patients in the right post code have the avaliblity of trials,but the patients that are not responding have little choice the consultant has no choice.

My husband had on trials MX1 was randomised for CDT after 6 cycles had increased to 80 percent .failed.
Then Velcade on same trial.responded well.had SCT. Failed removed from trials
Now it's third line CDR,because its hard to monitor he will have BMB every 2 months!!!

We are hoping this works,given the choice,we would have preferred to go down a different route as CDT and CDR,no matter how good are the same based drug.
Trials are not open to my husband!!!
It looks if it will not be considered compassionately until he has tried CDR

There are many words missing from medical jargon,like compassion,peace of mind, Love Eve

[tomParticipant]

Hi Eve
Well for me I think NICE has got too tight a hold on the why's and wherefore of peoples treatment.

I don't know how many are on the NICE panel nor how much they get paid?? but that must be coming off the central funds, I say let our Dr's and Consultants say what treatment is best for us.

Tom Onwards and Upwards xx

[MothasParticipant]

This is how NICE works, as far as I understand it operates on guidance from a mixture of health care specialists, local and national government, bean counters and patients advisory groups.

http://www.nice.org.uk/aboutnice/howwework/how_we_work.jsp

We are internationally recognised for the way in which we develop our recommendations, a rigorous process that is centred on using the best available evidence and includes the views of experts, patients and carers, and industry.

We do not decide on the topics for our guidance and appraisals. Instead, topics are referred to us by the
Department of Health.

Topics are selected on the basis of a number of factors, including the burden of disease, the impact on resources, and whether there is inappropriate variation in practice across the country.
Our guidance is then created by independent and unbiased advisory committees.

Take our clinical guidelines for example, where we commission four external centres and one internal centre to produce them on our behalf, according to the topic area.
The National Clinical Guideline Centre is the largest of these centres; it was established in 2009 from a merger of 4 smaller guideline-producing centres specialising in acute care, chronic conditions, primary care, and nursing and supportive care.

The other three external centres that currently produce guidance are the National Collaborating Centre for Cancer, the National Collaborating Centre for Women´s and Children´s Health, and the National Collaborating Centre for Mental Health.

Staying up-to-date
The world of health and medicine is a fast moving one, with thousands of research papers published every year. To keep pace with the changes, we make sure that our guidance is regularly reviewed to remain up-to-date and to take into account any new evidence that may influence our recommendations.

Open and transparent
We have an open and transparent consultation process throughout the development of our guidance and quality standards which allows individuals, patient groups, charities and industry to comment on our recommendations.
In cases where we have to reject the use of a drug on the grounds of cost, we encourage drug companies to submit a patient-access scheme. Patient access schemes are special ways pharmaceutical companies can propose to enable patients to gain access to high costs drugs. This can help lower the overall cost of a drug on the NHS.

Have your say
We value the input of patients, carers and the general public in the development of our guidance and other products. By involving the very people for whom the guidance will be relevant, we put the needs and preferences of patients and the public at the heart of our work.
In 2002 we established the Citizens Council, the UK's first advisory body made up entirely of members of the public from across the UK.
The Citizens Council has produced a range of reports on challenging issues facing NICE, including the use of incentives to encourage people to live a healthy lifestyle.
The council's recommendations and conclusions have been incorporated into a document called Social Value Judgements which describes the principles that NICE and its advisory bodies should use when making decisions about the clinical and cost effectiveness of interventions.

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