Fluctuating need and the single visit
The framework describes needs in terms of their nature, intensity, complexity and unpredictability. Unpredictability is named on its own, which means variation across a day or a week is part of the picture the assessment is supposed to consider rather than noise to be smoothed out. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
The decision support tool guidance also expects practitioners to seek the participation of the individual and their representative, and to take account of the knowledge of family members and carers where consent has been given. That is the route by which the other twenty three hours of the day get on the record. Source: Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.
Where Parkinson's care usually shows up
The assessment covers 12 care domains and considers them as a whole. These are the ones where families describing Parkinson's care most often hold detail nobody else has. It is not a shortlist and no domain here implies a level.
- Mobility. Moving, position, transfers and falls, and the help these take.
- Nutrition: food and drink. Eating and drinking, and any help, equipment or feeding regime needed.
- Communication. Expressing needs and understanding others, and the help this takes.
- Continence. Bladder and bowel needs, and the help these take.
- Skin and tissue viability. Skin condition, wounds and pressure areas, and the care these take.
- Cognition. Memory, understanding, awareness of risk and decision making.
All twelve are set out on the care domains page.
What to record, and how
- The best hour and the worst hour of the same day, with times.
- What happens around a late or missed dose, and how long it takes to settle.
- Freezing, falls and near falls: when, where, and who was there.
- Whether transfers need one person, two people or equipment, and which.
- Swallowing and eating: how long a meal takes, and what has to be modified.
- Nights: how often help is needed, and for what.
Dates and counts, not adjectives. A record covering seven consecutive days is far more use than a strongly worded paragraph.
What to do next
The free typical day record sheet gives you a week's structure. If you want it written up across all 12 domains with the letter that matches your stage, that is the CHC Family Evidence Pack. Parkinson's UK, Age UK, Carers UK and Citizens Advice all offer free help with the process.
Eligibility for NHS Continuing Healthcare is decided by the integrated care board, informed by a multidisciplinary team assessment. We are not part of that assessment and cannot attend it, and nothing here predicts or implies a decision.
Questions families ask
Does a Parkinson's diagnosis decide NHS Continuing Healthcare?
No. The National Framework states eligibility is not determined by diagnosis, setting or care provider. It turns on the nature, intensity, complexity and unpredictability of the person's needs. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
The assessment visit caught a good hour. What can I do?
Record the range rather than the average. Unpredictability is one of the four characteristics the framework names, so a written account of the best hour and the worst hour, with dates and times, is directly relevant information rather than a complaint about the visit. Source: National Framework, last updated 27 October 2022.
Does medication timing matter to the assessment?
The medication domain covers medication and symptom control, including how it is managed and what is needed to maintain it. Describing what happens around a missed or late dose is a description of care needs, not a clinical opinion. Source: Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.
Sources
- Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
- Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.
- NHS website, NHS continuing healthcare, nhs.uk/conditions/social-care-and-support-guide.