1.  INTRODUCTION

  1.1  The Motor Neurone Disease (MND) Association welcomes the opportunity to submit evidence to the Health Committee's inquiry into Public and Patient Involvement in the NHS. Representatives from the MND Association have attended a conference on Local Involvement Networks (LINks) and read the consultation document "A Stronger Local Voice" and the Government response to it.

2.  PATIENT AND PUBLIC INVOLVEMENT IN THE NHS

  2.1  We would like to make the following points on the proposed new set up for patient and public involvement in the NHS:

  2.2  It is important to involve individuals as early as possible in the process, extend membership beyond the larger groups and to try to get the harder to reach groups.

  2.3  As Patient and Public Involvement Forums (PPIFs) were set up only three years ago, there need to be some quick wins to show that LINks will make a difference where perhaps PPIFs did not. Many people are sceptical about how long LINks are likely to remain in place.

  2.4  It is important to raise the profile of LINks through the media and other channels. PPIFs had a low profile outside of the health sector and it is important to address this for LINks. If LINks are to be successful they will have to become more widely known to the general public.

  2.5  LINks need to act as the focal point for patient involvement across health and social care. Currently social care and the NHS both have ways of consulting with patients and LINks need to make sure they are not biased towards health or social care and not duplicating work.

  2.6  LINks need to be kept free from personal agendas and political interference.

  2.7  LINks need to make sure that the host organisation has independence from the local authority, and that the local authority is not exerting undue influence on the host organisation.

  2.8  There needs to be consideration as to how LINks will fit into the democratic process by working with local councillors.

3.  ABOUT MND AND THE ASSOCIATION

  3.1  Few disorders are as devastating as MND. It is a rapidly progressing and fatal neurological condition. MND progressively attacks the body removing the ability to walk, talk or feed oneself, but the intellect and senses usually remain intact. There are estimated to be around 5,000 people living with MND in the UK. Half the number of people with the disease die within 14 months of diagnosis.

  3.2  The MND Association's vision is of A World Free of MND and we will fund and promote research to bring about an end to the disease. Until that time we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.

Mark Hill

MND Association

January 2007