Thursday, 18 June 2015

'We need your help and we need it urgently'. That was the plea directed at newly elected Hertsmere MP Oliver Dowden when he met two members of the South Herts Motor Neurone Disease Association at a Parliamentary Reception on Tuesday.

Glenn Phillips and  Helen Lipieta, from Bushey, and both suffering from Motor Neurone Disease had been invited to attend the event that marked the presentation of an MND Charter to Downing Street.

With voices weakened by MND, their clear cut strong request  prompted an immediate response from Oliver Dowden who pledged to support members of his constituency with Motor Neurone Disease.

'Please let me know how I can help,' he said.

Oliver Dowden was amongst MPs and Peers who had been invited to the event that welcomed MND sufferers, their carers, families, volunteers and fundraisers to help push the campaign into the political arena.

Exceeding expectations, 33,630 people had signed the charter that calls for the right care, in the right place at the right time and aims  to ensure people with MND and their carers have access to timely and appropriate information , care and services to allow them to maximise the quality of their life and give respect and support to their carers.

The event had been backed by Charlotte Hawkins, TV presenter whose father had died of Motor Neurone Disease.Charlotte, who was still raw from the death of her dad, said, 'It is a horrific disease. I watched the  person I love, disappear before my eyes . MND Chief Executive Sally Light thanked everyone who had supported the charter.

'The signatures delivered today on the MND charter is an  incredible show of support, ' she said. ' People agree with us that those with MND should be able to access the help they need, when they need.'

Glenn Phillips, who  attended the event with carer Marta Jaskova,  his mother Doriel, Branch Secretary of the East Dorset and New Forest  Branch of the MNDA, and a second carer said, 'I was diagnosed with MND in August 2011. Every minute of every day, you can never escape this disease.  Life expectancy from diagnosis is two to five years, and around half of those die within 14 months.

'Many  people die before they get the care they need.  That is unacceptable.  We do not have time to wait. We need help now.'

The MND Charter  has already received endorsements from leading medical institutions (including Royal College of General Practitioners, Royal College of Nursing, Association of British Neurologists, Royal College of Speech & Language Therapists, Chartered Society of Physiotherapy, Help the Hospices and Rare Disease UK).

For further information MND  support group for people with MND and their carers in the South Herts Area, please contact Jenny Fellas by email:  chris_jennyfellas@hotmail.com

Glenn and other members of the South Herts MND Support Group receive support from the Starlight Centre at Peace Hospice Care.