IF Karen and Andy Wade had gone along with what the council had said their vital home improvements might have only just been completed.

Karen, 53, was diagnosed with motor neurone disease (MND) in 2015, two years after she had first started showing signs of the condition.

Since then the mum-of-two has lost the use of her arms, legs and voice, while husband Andy, 62, has fought to make her life as comfortable as possible in their Cuddington home.

In 2016 Cheshire West and Chester Council agreed to fund home improvements to help with this – but Andy was shocked by the waiting list they would be put on.

“To make things more comfortable for Karen we wanted to put in a wet room with a shower downstairs that is wheelchair accessible,” he said.

“The local authority said that, yes we would qualify for this, so we thought that was great, but we were told that the work would have to be done to their specification.

“Then we were told it had to be the local authority’s builders, and the waiting time for them to do the work would be around two years because they are working on a back-log. With MND time is not on your side.”

The Wades were told they could not be given the funding unless they used the council’s own builders, so they borrowed money from relatives to fund the £45,000 extension, which was completed by another builder in six weeks.

They faced a similar experience when they needed a stairlift to be installed, but CWAC insisted they would have to have a lift fitted in their home instead.

“The impression we got really is that they are not geared up to deal with cases of MND,” said Andy.

“Eighty per cent of people with MND die within three to five years. We wanted to make life as comfortable as possible as soon as possible.”

Karen’s story was brought to CWAC’s attention at a recent health and wellbeing board meeting, where the council and local NHS bodies agreed to sign the MND Association’s MND Charter, which sets out best practice for supporting people with the condition.

“There does need to be much more understanding about MND,” Andy added.

“I think it is getting better, particularly with high-profile cases like Stephen Hawking and Ronnie Corbett, but we have a long way to go yet.”

Cllr Paul Dolan, cabinet member for adult social care, said: “We want to help ensure our residents with MND and their carers have access to early diagnosis and information, as well as high quality support and treatment at the right time.

“We want people who are diagnosed with MND to be treated with dignity and respect, feel valued, respected, listened to and well supported.

“Andy and Karen Wade’s story is a clear example of the importance of working together to support our residents with MND better, and that’s why we’ve signed up to the charter.

“This is a positive move forward, with all partners of the health and wellbeing board fully supporting the adoption of the MND Charter across west Cheshire. The charter is a statement of the respect, care and support people living with MND and their carers deserve and should expect.

“In line with the charter, we and our partners have all agreed to examine our processes to ensure the right services are available at the right time and easily accessible for all. We will regularly review the progress of this work, including the views of service users and their family/carers.”