One member, Cheryl Harris, talked of the scramble to find professional care for her husband when she was given two weeks' notice of her surgery date, after 16 months on the waiting list.

Twenty-six phone calls later, she finally secured Bob six weeks' in-home support through an aged care service.

The New England Carers Support Group members met at Tamworth Community Centre for a special lunch and talks on their challenges and needs, during National Carers Week.

Facilitated by GoCo, the meeting was a chance to discuss their current challenges and needs from the group.

Mrs Harris shared her story of caring for Mr Harris, who has used a wheelchair for 21 years after cancer radiation treatment damaged his spinal cord and left him with paraplegia.

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She has been his carer ever since. Married almost 49 years, she said they "work together as a team".

While they needed a hand during and after her surgery, they preferred to help themselves, she said.

"I know there's other people out there that need help, but ... can't get help - why should I get it when I don't need it?" Mrs Harris said.

"And it's an intrusion - when you can do it yourself, do it yourself.

"There will come a time, probably, when I can't do it, but that's a bloody long way down the track."

Despite some of her own serious health issues, Mrs Harris said: "I'm on top of the ground and not underneath it."

"Life's what you make it; you've just got to keep on keeping on."

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A lack of respite services was a common complaint among the carers; another was frustration with bureaucracy.

Parents Bev and Steve Bartlett care for their 21-year-old daughter Ashleigh, who has a rare genetic disorder and needs 24/7 care.

"We're trying to care for her as much as we can at home, but the NDIS and everybody like that is making it so hard for us," Mrs Bartlett said.

"It's just slow; it's very slow. You might put in for something through the NDIS and it might take you two years to get it.

"We're waiting for a car modification and it's been two years.

"And our health's deteriorated, because we've got to carry her in and out of car seats."

Mr Bartlett said: "We're just trying to get some service done for our daughter, who can't communicate."

However, the bright spot was Northcott day programs - "a godsend" for Ashleigh and her parents.

"There's a [general] lack of services, but some of the services are fantastic," Mrs Bartlett said.

Members said "a problem shared is a problem halved" and "you talk to people and go home and feel much better" after group meetings.

But GoCo spokeswoman Anne Hickson said many carers wouldn't even able to attend "because they can't leave that person behind".

"We don't really have a lot of respite services available here," Mrs Hickson said.