Health and Social Care Bill

Memorandum submitted by Tina Read (HS 74)

My name is Tina Read. I have an inherited bone condition called Hereditary Multiple Exostoses (HME). I have been a member of the Human Genetics Commission Consultative Panel since 2007. I was very concerned about passing on my condition to my children. There is a treatment called Preimplantation Genetic Diagnosis (PGD) in which a cell from an embryo created by IVF is tested genetically and only embryos which do not have the inherited condition are implanted into the mother. Unfortunately PGD for HME was not available on the NHS until 2009, since I am 50 this year, this treatment was not available for me. I did go ahead and have children and I have felt very guilty that my son has needed an operation for a bone growth on his leg which appears to be growing back.

Although it was too late for me, I raised the issue of PGD many times on the consultative panel of the Human Genetics Commission. I am saddened at how variable treatment availability is around the UK. PGD is not commissioned nationally and no comprehensive study has ever been conducted into the possible savings to the NHS if people with inherited conditions were allowed to avoid passing on their conditions to their children. The availability of PGD varies widely around the country when decisions have sometimes been made at PCT level, often by people who don’t understand the treatment. I worry that the decision makers at GP Consortia level will be even less likely to make informed decisions about PGD.

I am concerned that GP consortia will not have enough information to make good decisions whether that is about treating genetic conditions, cancer or other diseases or ordering supplies. There needs to be a system to provide advice on treatments and supplies. GP consortia will not be able to be properly informed about the vast array of information they need to make fair decisions without expert advice. GP consortia need to provide a good account to their patients for why they would go against this expert advice.

The purchasing power of the NHS will be broken up by the competitive format of Foundation Trusts and GP consortia. Money which should be being spent on NHS patients will be going towards making private companies and GPs rich. Patients will not trust that their GPs are well enough informed or motivated by the financial system to give them the best care.

March 2011