Anne Cregan’s daughter - who is supposed to be resting as she is 32 weeks into a high risk pregnancy - spoke of how she has been left to care for her mother during the day except for three brief home help visits from three different agency providers because, despite their case being red flagged as urgent, there is still no adequate care plan.
Anne and her daughter fought back tears as they spoke of the devastating impact the illness has had on the family and their frustration with the lack of a co-ordinated care plan that accounted for and met Anne’s complex needs and circumstances.
The situation has become extremely urgent after a change in circumstances has left Anne, who was a fit and active and hard working mother of four employed at the Derry Journal until illness overtook, without a primary carer for the past six weeks.
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Her daughter, meanwhile, could be called into hospital to deliver at any moment.
Anne, whose other three children work during the day and who help with her care needs in the evening and night time, said she fears what will happen to her if she is forced to go into residential care at the relatively young age of 57, and wants to stay in her own home in Creggan. “Mammy first took sick in March 2014,” her daughter recalls. “She took a dead arm in the middle of Mass and it went from that.”
“I didn’t know what was happening to me,” Ann adds.
Foyle SDLP MLA Sineád McLaughlin, whose office has been working with the family, said Anne’s family is one example of the “many families who are being failed by our broken health service”.
Over the following two years, medics grew to suspect Anne had a rare condition called Langerhans cell histiocytosis (LCH) as well as potentially a second condition which sparked no-warning blackouts and fits. Brain surgery in Belfast confirmed Anne was suffering from LCH, a disease that begins in LCH cells, which normally helps the body fight infection. Mutations may cause too many LCH cells to grow and build up in certain parts of the body, where they can damage tissue or form lesions, as in Anne’s case, and trigger a wide range of debilitating and life impacting related conditions.
Anne has also been diagnosed with subliminal function movement disorder, neurological difficulties affecting controlling her limbs and dissociative attacks where Anne basically blacks out, mostly with no warning. Her daughter catalogues her mother’s other conditions including liver cirrhosis resulting from medication and side effects, Type 2 diabetes and diabetes insipidus, issues with fluid absorption, blood sodium level problems and cellulitis in her feet. “That’s the ones I can remember off the top of my head,” she said.
Anne, who blacked out on numerous occasions during this interview, said: “It’s like a built in coping mechanism. It just knocks me out, in crowds, or with things like car lights. It is like somebody flicks a switch. That is the bit I hate, I have no control over it, it just happens. I have no concept of time.
“I have no quality of life. I would try my best to do jigsaws to try and keep my brain active but it is very frustrating that you can’t do things.
“I’m just a shell, I am literally just a shell. It impacts on everybody and everything so much. I was always up and at it before. I’m not even that old.”
Her daughter, meanwhile, contrasts the woman who raised and inspired them with what her mother now has to deal with on a daily basis.
“My mother was the most hard working and independent woman I knew,” she said. “She will never be the person she was. We get glimpses but she will never be the same.
“We have been pushing for more hours, asking for more help. The only help that was got outside of mammy’s calls in the morning and night was two hours respite a week. I am back from Australia a year and I have been on asking for more help and support. An additional two hours a week was approved but never, ever filled due to staffing issues.”
A third call out each day by home helps was also approved, but never filled due to staffing issues until recent weeks, she adds.
The family said they weren’t told what help they could apply for initially to help with care and financial costs. They had to turn the living room in their previous home into a bedroom for Anne and carry her upstairs to the bathroom before they relocated to their current address, which already had some special adaptions fitted years before they moved there.
Anne said she had found some of her frequent hospital visits frightening and confusing over the years and did not want to go into a residential care home but wanted to stay in her home surrounded by her family.
Her daughter fought back tears as she said: “It’s hard because you want her to have quality of life. Every time you feel like you are fighting and other people who don’t know mammy, or what she goes through on a day to day basis, are making calls. It’s just not nice. Mammy hates going into the hospital because every time she goes in it’s for days and weeks. Mammy could go into the hospital with something minor and doctors are asking about something different. We always get phonecalls from whatever ward she is on to take her out for air or if she is having lots of black outs and they are short staffed they are happy for us to come and go. And that is the way it has been.”
“We could write a book about how she has been treated. People don’t understand the neurological side of things. There are some days mammy has great days and you wouldn’t know to look at her and she will be able to walk herself with the walker or wheelchair and could go out and make herself a cup of tea. Those good days are very few and far between and it is great because you can kind of get a glimpse of mammy before she was sick. She was a very independent woman before. Other days short term memory loss kicks in, exhaustion. Some days she can’t open her eyes she is that exhausted.”
Because of Anne’s complex needs and frequent hospital visits there had been talk of issuing a hospital pass or ‘passport’ which would mean Anne would not have to wait in A&E to be seen but could go straight to a ward. This hasn’t materialised. “When you get sent over from the GP you have to wait every time. The last time we were waiting 10 hours in the waiting area. She was kept in A&E for three days in a cubicle in a bed there and they rang me on a Friday morning to say mammy’s sodium had come up but they were afraid it would go to the other end of the scale and goes too high. I went over to A&E, found her outside having a bit of fresh air and got a phonecall to say mammy had discharged and I looked and mammy had her catheter in and drip in and I told them I was outside with her and wheeled her into her room and there was already someone else in her bed.”
Previous care reviews had led to recommendations which were never implemented due to staffing issues and a third daily call out approved in December 2021 was only actioned over recent weeks, while a fourth daily call has also been applied for, Anne’s daughter said.
At present Anne receives three visits. “They could be in and out in five minutes or here for 15 minutes. We have asked for continuity of care, for the same people to do that, and for the two hour sitting service to involve carers mammy knows. From around 9am to 6.30pm there is no other help, and the other three work so I have to, but I can’t really as I have a one and a half year old and a high risk pregnancy.
“We have been asking for more help for years. They came back to say ‘we can’t provide 24 hour care in the community and your mammy will have to go into residential care’. We are not asking for 24/7, we are just asking for the care and support she needs during the day. The sitting service I asked about for 14 hours a week would only be two hours a day. What happens from 11.30 to 6.30pm? If she falls, who is that on?”
Respite has been mooted by the Trust but Anne’s daughter said there are only certain places where Anne can be accommodated because of her younger age, with most residential places catering for those aged 65 and over.
“She wants to be here in her own house. They haven’t come up to assess her but even at that we were informed that if she goes in to respite for more than two weeks she is in danger of losing her calls, when we have only just got the third call,” Anne’s daughter said. “We know what mammy needs and it is not good enough what they are coming back with. They are still neglecting her care needs. She can fall, she can black out. All we are looking for is someone who can be here with her during the day so that if she does fall they can lift her, or ring an ambulance.
“They know that I have such a high risk pregnancy and I should be on bed rest but what happens when I get rushed in? It’s absolute madness. I don’t think half the conditions are taken into account. It feels like she is getting discriminated against because of her age, because of how young she is. This is five weeks now we have been back and forth trying to flag how much of an emergency situation this is. We keep saying the longer this is left the more high risk I am, the more high risk mammy is.
“They did offer a one off payment for me to pay family and friends to come in and sit with mammy to let me have a break but even at that I don’t get a break because it’s me that is having to work with social workers and other issues.”
The family say they have encountered some very helpful frontline health and social care staff who have made representations but that there seems to be push back from others making decisions.
“Everything is an emergency situation, there’s a red flag and yet we are no further forward. It is just frustrating, frustrating that people who need the carer have to fight for what they deserve.”
SDLP Foyle MLA Sineád McLaughlin’s office have been assisting the family in trying to get a resolution for their mother. Ms McLaughlin said: “The truth is, no family in Derry or anywhere else in the North should ever have to go through what Anne has experienced over the past six years. Hearing Anne’s story and the impact it has had on her family is as frustrating as it is devastating.
“Anne urgently needs a proper and comprehensive care plan to help her cope with her conditions and our service should be able to deliver one that accounts for her and meets her needs and circumstances. Unfortunately, Anne’s family is one example of the many families who are being failed by our broken health service. Of course, staff in our health service are working round the clock and we all understand the pressures they are under. But the situations that Anne and many families are finding themselves in are simply untenable and we need to see change.”
*The Western Trust have been contacted for a response but a response had not been received by the time of going to press.