When love alone is not enough - devoted Ipswich mum fights for improved care for her disabled sons

Andrew and Michael Fulcher, who are having problems with their care package

Michael and Andrew Fulcher, who have Duchenne Muscular Dystrophy, say they and their mother Lynn have often been let down by the care system which is supposed to look after them. The brothers are entitled to a carer each, day and night.

The brothers, who live with their mum in Ipswich, need round the clock care to help them cope with the genetically inherited and debilitating condition.

They are in wheelchairs, have movement only in one hand and rely on others to feed, dress and look after them.

But over the last few years that care has been stretched. Lynn said both Michael and Andrew are entitled to a carer each, day and night, as part of a package of care designed to provide the best quality of life available to them.

Lynn Fulcher with Andrew and Michael and one of their nurses Liz chukwu.

Sometimes though it is left to Lynn to look after one of her boys because the various companies responsible for delivering their care allegedly cannot provide enough staff.

While things have recently improved, they have been worse in the past. A company which was formerly the lead provider of carers for Michael and Andrew, Pulse Community Healthcare, was once unable to fulfil its obligations for 31 days over a period of several months, Lynn has claimed.

While trying to live her own life, look after grandchildren and maintain her home, she was the only person around on those occasions to look after her sons. The same thing happened, Lynn claims, for a total of 14 nights, again over several months.

“You ask them to get care cover and they say they haven’t got the carers or no one to send in,” she said.

“They’d just ring me up, sometimes about six o’clock at night for an eight o’clock shift: ‘Sorry, we can’t find you a carer for tonight.’

“The 14 nights I did on my own, sometimes they weren’t covered in the rota and they’d put it out to agencies and they couldn’t find anybody at all.

“It makes you angry. I’m awake all day with them, then up to them during the night turning them, whatever they need. It’s a tremendous strain. You’re tired all the time and you can’t get out to the shops if there’s nobody here with them.

“Every time the phone rings we say to ourselves here we go again, who’s not coming in today.”

Lynn also spoke of language barriers meaning they cannot hear her sons when they are struggling to speak, or not having drivers available to take her sons out.

Michael and Andrew, aged 29 and 33 respectively, are both intelligent men. They have a passion for cars and, when the care is available, get out in their custom van for a drive or travel to car shows. Getting out of the house means a great deal to them – it is independence and control of their lives. As Lynn said: “There’s only so much television they can watch.”

She added a company currently providing carers, InVent Health, also had problems providing the required number of staff on some occasions.

The effect inconsistent care from the companies looking after them can have on Michael and Andrew can be significant.

“When we’re lacking the care it makes us worry about our condition more,” Andrew explained. “Yesterday, when we were able to get out for the day, we didn’t think about our condition. We just enjoyed the day and we had no worries.”

And while Lynn will put on a brave face when carers don’t turn up, Andrew can see what it does to her.

“Seeing her in tears is not a nice thing. It defeats the object as to why we have care.

“We just want to pay her back for all that she’s done for us. We want to give her her own life back.

“For her to put her health on the back foot just to look after us, that’s what I don’t like.

“That’s why we want mum to have her own life, not worry about us all the time.”

When the right support is there for them, Michael and Andrew feel like they are getting their lives back. But when it is not, or the people coming into their home are changing so frequently it is impossible to get to know them, more strain is piled onto the family.

“It’s easier to trust them with your life when you know a bit about them,” Michael said. “We can’t just work with anybody because you have to rely on them.

“We have to watch mum physically getting tired giving us what she can when it’s not her job.”

For the family it feels as though Michael and Andrew are not treated as individuals. They have to do everything together when only one carer is available.

“The money is there for them to have a carer each,” Lynn said.

“In general, care companies can’t seem to be able to get the staff in this area for some reason. If they do get staff it’s got to be the right sort of person in here. A lot of the time the companies think it’s alright just to send one carer in because I’m here.”

When that happens, if Lynn has to leave the house while looking after her grandson, or to go to the shops, one of her sons is left having to wait for assistance.

The care is not the only problem. Modifications, arranged by Ipswich Borough Council, made recently to the Fulcher’s home allowed Michael and Andrew to have their own rooms for the first time. They and Lynn spent 12 weeks away from home while the work was done and hoped to move back into a finished, accessible home fit for their needs.

“We moved back in here and we shouldn’t have done, we shouldn’t have moved back for another two weeks,” Lynn said. “Half the coving was ripped off the walls. They hadn’t put the worktops back properly. I was without a cooker for a week.

“When we came back in we had no hot water for the first night. We had hot water flushing through the toilet and cold water through the hot tap. I was boiling water in the kettle for their washes.”

There were also draughts coming through windows, now rectified by IBC, chilling the rooms and keeping both men awake at night. A month went by since this was first reported to the council, Lynn explained, before the issue was dealt with.

Liz Chukwu is an independent intensive care unit nurse who travels from Sussex to work with the Fulchers. Referring to the time taken for corrective work to be done on the windows she said: “I just find it diabolical that they’re not timely, not treating it in a timely manner. Weeks will go by and Mrs Fulcher won’t get a phone call.

“When you’re able-bodied there’s a certain level of fight you can maintain because you know if you shout enough times something’s going to get done. But when you’ve got a disability and when you’re worn out, mentally fatigued, physically fatigued, it just becomes much harder for you to be fighting every single day.

Pulse Community Healthcare

Pulse was the lead provider of carers for Michael and Andrew between October 2013 and August 2015, and still employs some carers working with the family.

A spokesman for the company said: “As an established provider, we aim to offer the highest standards of care.

“Pulse Community Healthcare has been part of the team supporting the Fulcher family over the last two years and we have always worked hard to address issues that have arisen and will continue to work together with all the other parties in future.”

InVent Health is one of the companies currently providing carers for the Fulchers.

Mike Mitchell, its managing director, said: “InVent Health continues to work closely with the NHS Ipswich and East Suffolk Clinical Commissioning Group (CCG) and all stakeholder partners to ensure sufficient and effective care delivery to all our patients across the region.

“We have fully delivered and fulfilled our contractual obligations in a safe and effective manner regarding this package of care; we are continuing to work in partnership with the family and care partners on a person-centred developed care and delivery plan.”

A spokesman for the Ipswich and East Suffolk CCG said: “The CCG is committed to providing high level of care to the population of Suffolk.

“We work in partnership with all families and carers to ensure care packages are appropriate.”

An Ipswich Borough Council spokesman said: “We have been in constant contact with the family as we are as keen as they are to get everything right.

“We have carried out extensive works and have been back to make amendments where necessary. We are returning next week to complete the painting work.”

Technology boost

Among all their trials and tribulations, there is a ray of positive light for Michael and Andrew.

A digital system, called Eyegaze, is being funded for the men by the Joseph Patrick Trust, and will be crucial in improving their quality of life.

The software will allow them to use just their eyes to control phones, computers, televisions, things either extremely difficult or impossible for them at the moment.

Michael and Andrew trialled the equipment recently and for them it was a revelation.

“It will be like a whole new world,” Andrew said. “It’s got a special infra red camera that goes where your eyes go so you can click on things without having to use your arms. It’s more privacy which is obviously important for us. It’s when you think of all the ways you can use it to give you freedom.”

Michael added: “Since we discovered the Eyegaze I was able to do everything I used to do, with my eyes.

“It was very good. I was expecting it to be hard work but its pretty straightforward really.”