** UPDATE **
* I don't know how to share the documents so I will add some helpful documents I created at the bottom of this post. There is so much experience and wisdom on this forum, lots of people can help you. Bring together the MDT and advocate for your loved ones - having a clear diagnosis is important, GSF, GP, Neurologists, Physios, palliative team ... do not forget how important your loved ones primary carer is in this. in dads case, mum is his expert care ... if anything happens to her, the situation declines rapidly into crisis.
** Remember what I am sharing is about my dad who has CBD and is end stage, he outlived his fast track - the way his symptoms present will be different and also he has other underlying health needs. What I do know is 5 years ago, he played Golf 3 times a week and drove his car. Since he was awarded the fast track the comparison between the health domains is very evident meaning we could bring the evidence together to support this. It's all about evidence.
*** We won't make decisions about you, without you - is a key statement in the NHS so I was clear at the meeting that my dad could sit in and this must be done in person, there is no way he could be there via a teams / zoom meeting - the meeting was held in my parents house.
**** CHC covers lots of people, I just made it my job to become dad's and mum's advocate and to do all the groundwork that the CHC assessor needs to do, making their life easier. I was also not going to just assume the free flow of information between the various NHS departments, GPs, social services - I went and got it, printed it and shared it.
we’ve just got Dads CHC approved post his fast track from May 23.
It’s a minefield - it’s been 12 months of massive stress for my parents, all of us.
It’s certainly not consistent across the UK.
There is no given however as those will know, lots of preparation, evidence and the opportunity to advocate for your loved ones is vital and puts you in the best position for a positive result. It takes time so being forearmed is key, don’t expect the evidence to be available as typically it’s not. You have to go and get it.
I’m happy to give people pointers if needed and share frameworks we used to support where I can.
We wrote dad’s DST and went into clinical depth across all domains ensuring we had all the evidence. I gave the assessor the DST.
I have to thank people on here as they shared some amazing tips that really helped 🙏
Here is a little document that I put together that you can read, that may help how I put the DST together and approached each of the health domains.
Overview
Dad is an XX-year-old gentleman with advanced Cortical Basal Degeneration (CBD)—a progressive, rare, and unpredictable neurodegenerative condition. He also has two non-healing wounds (over XX months), an indwelling urinary catheter with recurrent UTIs, significant mobility issues, deteriorating communication (dysphasia), increased dysphagia putting him at high risk of aspiration, and newly escalating neuropathic pain. He is fully dependent on carers and his wife, XX, whose own health has deteriorated under the strain of caregiving. XX condition is terminal, and he is in the final stages of his disease trajectory, requiring palliative and end-of-life care at home in line with his wishes.
The aggregated evidence across the DST domains demonstrates multiple High levels (e.g., Nutrition, Skin, Mobility, Drug Therapies) and at least Moderate to High in several others (Continence, Communication, Psychological/Emotional Needs). Moreover, “Other Significant Care Needs” (i.e., his wife’s deteriorating health and the consequent carer breakdown risk) add further risk to the sustainability of his care plan. Taken together, these needs point toward a primary health need.
Nature
• Rare and Complex Neurological Condition: XX advanced CBD presents with progressive neurodegenerative changes affecting muscle tone, swallowing, and communication. This is not a straightforward or stable condition; it inherently requires skilled, clinical oversight to manage risk factors such as aspiration, infection, and pain.
• Palliative/End-of-Life Requirements: He is on the Gold Standards Framework (GSF). This necessitates comprehensive, clinically informed care planning, with timely interventions to manage rapidly escalating symptoms.
• Interdependence of Needs: His non-healing wounds, dysphagia, neuropathic pain, and catheter care are clinically interrelated. For instance, infection risks from wounds and catheter can swiftly exacerbate his neurological symptoms and pain.
Because these needs involve specialised assessments, hands-on clinical management, and close monitoring by a multi-professional team (District Nurses, Palliative Care, GP, Neurologist), the nature of XX care is primarily health-focused rather than social care-led.
Intensity
• High Levels of Daily Intervention: XX requires 2× carers, 3× daily, just to manage fundamental activities (mobility, repositioning, continence). Wound care and catheter management are carried out by skilled professionals (District Nurses), and palliative staff also visit frequently.
• Significant Time Commitment: Feeding alone is protracted, requires vigilant supervision to avoid aspiration, and medication administration is slow, carefully spaced, and now includes neuropathic pain management requiring ongoing clinical evaluation.
• Carer Dependency: XX cannot safely meet XX’s needs alone due to her own health issues. If her capacity to care falters, urgent clinical oversight becomes critical to prevent deterioration.
The intensity of care—both in hours required and the level of expertise demanded—is far beyond a standard social care package.
Complexity
• Multiple Interacting Domains: XX advanced neurological deficits (CBD), recurrent UTIs, non-healing wounds, and severe dysphagia cannot be addressed in isolation. Each exacerbates the other (e.g., infection or pain can worsen mobility, cognition, and swallowing).
• Medication Management: His medication regime is evolving (e.g., neuropathic pain relief, potential use of antidepressants, strict antibiotic regimens for UTIs), and his swallowing difficulties add further complexity to safe administration.
• Carer Strain: Wifes declining health adds a second layer of clinical/social risk. Should she be incapacitated, the knock-on effect on XX care is immediate and severe.
• Communication Barriers: XX dysphasia complicates assessment and feedback about his pain, mood changes, and care preferences, requiring skilled interpretation by those familiar with his condition.
These factors collectively compound each other, indicating high complexity necessitating skilled professional oversight and coordination.
Unpredictability
• Fluctuating & Rapidly Deteriorating Condition: XX’s CBD progression can be sudden, particularly under the stress of infection or aspiration. A “minor” UTI can trigger a significant systemic decline.
• Risk of Acute Crises: Recurrent UTIs, wound infections, choking episodes, and unpredictable pain spikes require immediate and skilled responses to mitigate potentially life-threatening complications.
• Carer Breakdown Risk: XX’s own unstable health can force an abrupt escalation of XX’s clinical needs, as he would be left without essential daily care if she becomes unwell.
High unpredictability is present, reflecting a condition that can acutely deteriorate, demanding continuous vigilance and expertise.
Having considered the nature, intensity, complexity, and unpredictability of XX’s needs—and how these needs interact—the MDT’s clear recommendation is that XX is eligible for NHS Continuing Healthcare. His primary needs are health-related and exceed the lawful remit of social care provision. The level, frequency, and skill required to meet his care go well beyond standard social care, underscoring that his primary need is for ongoing healthcare.
Additionally, given his rapidly deteriorating condition, the MDT advises an urgent commencement of CHC-funded support at home, with regular reviews scheduled to ensure his needs (and those of his carer) continue to be met as his illness progresses.
CHC review update
CHS advise- Surrey heartlands
Fast Track CHC/End of Life Care
