A 47-year-old mother with motor neurone disease in Northampton has criticised the NHS after an assessment report she says is inaccurate left her with the care she says she needs.
Rachel Waters, from Weston Favell Village, was officially diagnosed with the rare and degenerative disease in November 2021 after years of being misdiagnosed.
The mother-of-two said: "I was relieved when I was diagnosed. I know it sounds crazy but it finally made sense. I thought, I will now get help and support to live my best life.
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"With a terminal diagnosis, you expect to get loads of help and support. I thought I could relax and enjoy the time I had left but that has not been the case. It has been awful. The last few months have been the worst. All of it has been a massive battle. I'm exhausted from it. I don't want this anymore."
In December, Rachel was given a year to live. She is wheelchair bound and cannot walk, she cannot eat solid foods and needs an operation to allow her to feed properly, all of her muscles have shut off except for her right arm, and her speech is slurred.
In search of specialist treatment, Rachel was assessed by Arden and Greater East Midlands Commissioning Support Unit as part of a Continuing Healthcare (CHC) assessment.
According to the NHS, CHC is a detailed appraisal of a patient's care needs – using a form called the decision support tool – to decide if someone is eligible to receive CHC.
Rachel's CHC report said she is fit and able and does not qualify for support.
Reacting to the report, Rachel said the report was “full of omissions” and inacurracies.
"How on earth can I be feeling safe? I'm terrified. I'm so scared. I'm 47. I can't be left in a bed to die. For goodness sake, I have got life left to live. I don't want to be chasing, appealing, fighting.
"I'm so stressed from not being heard.
"I could die tomorrow. I'm suffering. I'm in terrible pain. I'm not managing to eat now. And this is all speeding up the condition. The life expectancy is 50 percent die within two years, I have had this for five years.
"I have been humiliated, ignored, made to feel a fraud, and made to feel like I am not poorly enough yet. I'm getting more and more poorly. When will I be poorly enough? I'm so scared.
"I feel dumped. It's not good enough. I'm so desperate now because this is dangerous. It couldn't be more serious.
"Sadly, I may go before I need to because the symptoms haven't been treated, that's heartbreaking. My condition is extremely rare but it can happen to anyone
"My family is devastated because they are sick of seeing the mum they know stressed and in tears and unable to enjoy her life because everyday is spent fighting, chasing, arguing because I've got no support. They want me back, I want me back.
"I'm not scared of my MND, I'm scared of dying through neglect. I've lost all faith and trust in the NHS."
Rachel believes cost-cutting is one of the reasons her treatment is being denied.
"MND is an expensive condition and I will need an extreme amount of help. And, sadly, because I'm a tough cookie the care might go on for more than a year. So I might cost them a fair bit for a little while.
"But I paid in, I worked my whole life. There is no alternative to the NHS. I expect them to care for me, properly."
A major issue in Rachel's case is that there are no MND specialist nurses in Northamptonshire - and she is calling for that to change.
She said: "We have no specialist MND nurses in Northampton, so no one can help. I feel so on my own.
"We need the NHS to provide MND nurses for this county. Why have we not got any?
"MND Association says it is trying to get funding for nurses next year but that's no good for me. What am I supposed to do in the meantime?
"I want an MND nurse or a couple of MND nurses for Northamptonshire and I need them now.
"I need to stop being hidden, fobbed off and ignored. I want someone to be responsible to make sure my needs are being met.
"This condition is not getting better. We all know where this is going, and to lie in that report and say I can self-medicate and I can move about. It's so depressing. It's beyond insulting."
Arden & Greater East Midlands NHS response
Louise Newcombe director of clinical services at Arden and GEM Commissioning Support Unit said: “We believe that it is important that people who may be eligible for continuing healthcare (CHC) have fair access to appropriate and accurate assessment and, if eligible, receive suitable and high-quality care.
"Our assessments are undertaken by expert clinical staff, who have significant experience in supporting patients and their families through the assessment process and beyond whilst delivering to the national frameworks.
"Following the assessment, a report is then sent to Northamptonshire Integrated Care Board where the CHC decision with regard to eligibility is made, and then the individual is informed of the outcome.
“It should be recognised that every CHC assessment will be different and complex as each person’s individual need is different. Once an individual receives the outcome of their assessment, if they are not happy then there is an process whereby they can appeal.”
MND Association response
Sally Hughes assistant director of Care at MND Association said: “CHC is a vital source of support for many people living with MND. It exists to provide access to essential care for people living with the most severe health-related care needs.
"However, far too many people are let down by failure to deliver the care to which they are legally entitled. This places enormous pressures on people living with MND and their families.
“The MND Association wants everyone with MND to have access to the care and support they need, when they need it. We believe that the quality of MND care, and even the speed of diagnosis, still depend too much on where people live and which specialists they see."