Questions for Dari Taylor from CRY families

The debate

How pleased was she with the response from fellow MP’s for her bill?

Thrilled! 76 Labour MPs wrote to me to say they supported the bill, a total of 97 gave their support, and several others said they supported the issue but believed that new legislation was not the  answer.

The response in the debate was equally positive, and I was very pleased by the fact that MPs from all sides spoke broadly in favour.

Why did Dr Vincent Cable, who was one of the sponsors for the bill ask so many questions that Dari was unable to answer? e.g what percentage of lives could be saved by screening?” This had already been raised during the reading of the bill, when it had been ascertained that approximately 80% of lives could be saved. He also asked, “what percentage would want to know that they had a life-threatening condition?” I believe that it had previously been stated that, “Alison Cox maintained that only one person/family had stated that they had not wanted to know.” I felt that these were deliberately, irrelevant and damaging questions, as percentages could only be given per ratio of the population who had already been screened under a national survey.

I certainly don’t agree that Dr Cable was being deliberately irrelevant and damaging. As you said, he is one of 11 sponsors of the bill, and before he asked his questions he said “part of the purpose of the debate is to exercise critical scrutiny. We are all in favour of the Bill, but there are questions that need to be asked.”

Some of the questions that Dr Cable asked would require more research to answer. One, for example, asked what percentage of the people who are affected by the conditions are being picked up under the present system. Half of the problem, of course, is that we are not really sure what percentage are picked up: how many are misdiagnosed, missed completely, or never explained?

Other questions were very difficult when seen as questions, but seen as suggestions they were very constructive – such as the question of whether there was any attempt to collate the information to create a national database. Unfortunately I only had 4½ minutes to sum up at the end of the debate, so I was unable to answer all his points.

The minister’s reply

Did she think the minister addressed the issues in the bill?

First and foremost, the minister’s response was given by the medical establishment: they advise her, and they wrote her speech.

The interesting part of her speech is the last page or so, which was focused on the issue at hand and established the new body

When the minister summarised the bill did she deliberately digress from the issues raised in an effort to’ talk the bill out’ due to the time-factor.

No. She agreed over two months ago that she would not talk out the bill. Negotiations had reached the point that I was of the belief that she was to offer to establish an expert to write a new chapter. If she had not, I would not have withdrawn the bill.

Can she explain why the minister’s decisions were made before the debate was heard, and does this not rather defeat the process of democracy?

For a Private Member’s Bill from any part of the House to achieve support, there are always negotiations that take place in private.

I was originally asked to withdraw the bill on the basis of what was very good offer. I said no: I wanted the offer to be made on the floor of the House and recorded, and for other Members of Parliament to air their concerns and views.

Democracy is about expressing challenging ideas that persuade people to support a different policy or adopt a different stance. Democracy worked well in this Private Member’s Bill.

Prior to the reading of the Bill, and before entering the Strangers Gallery, Amanda was asked how she thought the Bill would be accepted.   Her reply was, “We generally have an idea of the outcome”.   Did Dari also have some inkling of what the outcome would be before presenting the Bill?   What was her reaction when she was asked to withdraw the Bill? 

Absolutely. I knew I had the medical establishment questioning much of what I was saying, and many were resistant to change. I worked hard to gain political support, not just from Labour MPs but Liberal Democrats and Tories as well.  

The new committee and the NSF chapter

Was she happy with the outcome of a new committee?

The new committee has the potential to deliver all that we asked for – so I am broadly happy, but very aware that we are not yet home and dry. The terms of reference include all that we asked for, as well as some other subjects; we will have to make sure the other subjects do not swamp our own. The membership of the group will include experts from CRY, as well as representatives from other groups; we will have to ensure that the CRY voice is heard, and the families who have brought this group into existence receive the credit they deserve. The tool of an NSF chapter has all the power we need to implement our goals; but we must make sure that the chapter is comprehensive.

Why does it take a year for this new body to be set up to discuss screening?

The time-frame of a year is for the committee to finish, rather than start. The expert group should be established very soon, but translating CRY research into detailed guidelines is a technical, demanding job. The government has very strict evidence-based criteria before it dictates medical advice, as is only right. Incorrect medical advice can be devastating, so I believe that it is worth taking the time to get it right.

By uniting with other Heart Organisations will CRY’s work which deals solely with young people, under the age of 35, be absorbed into other charities;  the majority of whom are concerned with the middle aged and the elderly?   I feel that many of our successes under CRY’s Campaign which we have worked so hard to achieve will be lost or accredited to others.

This is a CRY triumph, and I believe everyone recognises that. I am fully focused on the under-35s, and together we will keep the pressure up to make sure that none of our achievements is lost.