Appendix E: Support for people with fluctuating conditions
11(a). Please give reasons for your answer, outlining which parts you think are easy or difficult to understand and why.
11(b). How could we make the fluctuating conditions criteria easier to understand?
Singular comments or those made by a small number at Q11a and Q11b included:
- Those with solely mental health symptoms should engage in treatment.
- The criteria were a "massive addition" to the form.
- Examples of how fluctuating conditions affected respondents.
- Calls for the application form to be amended so clients have more open text space to describe their situation.
- Blesma felt the prompts were improved compared to the PIP form but additional questions on the length of use of an aid and the safety impact would be helpful.
12(a). If you said "yes", what other issues with the fluctuating conditions criteria do you think need to be considered?
Less commonly mentioned themes
Some requested changes to the form, with two suggesting general improvements, such as clarifying that this section is about fluctuating conditions or providing more examples and explanations. Specific suggestions included:
- Including an image of a prosthesis alongside other aids and appliances, probably a prosthetic leg.
- Adding narrative around 'good days' and 'bad days' in the descriptor.
- Using Crohn's and Colitis as an example in this section due to their unique nature.
A few mentioned the role of professionals in providing supporting information. One felt consideration should be given to determining the best person to provide information, with another commenting that their GP would need to know them better to provide helpful supporting information. One organisation highlighted other issues in obtaining supporting information from professionals.
"Another factor that was flagged was issues with getting 'fresh' evidence which can adversely impact decision-making. This could be for numerous reasons, including waiting on the formal diagnosis, a person self-managing, thus not seeing a medical professional regularly or due to waiting lists and waiting times for appointments." - EEPPIC
A small number of respondents felt more attention should be paid to the state of illness during the application, gave examples of fluctuating conditions, commented on practitioners, and two respondents called for a discretionary exceptional circumstances award.
12(b). In your view, what are the positive aspects of the fluctuating conditions criteria that we have not captured above?
The proposals, or aspects of them, were welcomed by some. For instance, two thought providing an average could measure fluctuating conditions, whilst Scotland Versus Arthritis welcomed the recognition of multiple conditions within the fluctuating conditions section.
Some felt there would be no positive impacts - all were individuals except for the organisation MACS. Some mentioned the role of practitioners, and a small number mentioned the descriptors, with two organisations calling for condition-specific descriptors not to be used as these were felt to be based on the medical model and did not well reflect complexities in people's lives, leading one to suggest:
"General categories and indicative examples within existing descriptors would be more flexible." - Health and Social Care Alliance Scotland
Glasgow City Council also suggested a way to ease the transition:
"If it was possible to have the points system as a means to assess straightforward conditions and then to have what were the former tests under DLA (and now CDP) as an alternative test, then you would be able to have the best of both systems. Furthermore, it would offer a smooth transition from CDP to ADP without the risk of loss of entitlement where only age has changed and not the disabling condition." - Glasgow City Council
13. How effective do you think the fluctuating conditions section of the application form is at helping us understand the needs of people with fluctuating conditions?
"More examples of how a condition fluctuates would be helpful to the applicant. This would include explaining changes to cognition (including confusion, anxiety, and memory) as well as how someone might be physically affected (fatigue, balance, appetite, falls)." -Neurological Alliance of Scotland
The Health and Social Care Alliance Scotland felt insufficient information about what it means to carry out an activity to an acceptable standard was provided, despite the legal definition appearing to give greater clarity. The MS Society Scotland felt it was insufficient to provide a detailed account of how people's functional abilities changed due to living with complex conditions. Alzheimer Scotland suggested using 'worst' or 'bad day' terminology may help a client better understand and describe the variable nature of fluctuations.
A few respondents suggested specific amendments to the form, including gathering information about reliability criteria and revising wording to include 'wheeled' when referencing walking. Two organisations suggested additional prompts. Blesma felt a prompt asking if an individual has days where they cannot use their aid or appliance reliably. It would be helpful noting that some people who have experienced loss of a limb seemed to focus on how they managed on days they wore prosthetics rather than days they couldn't. CAS suggested providing a prompt to explain post-exertion symptoms.
Factors that may impact client supporting information
"Fluctuating conditions may be seasonal in that they become worse in cold and/or wet weather (e.g. rheumatoid arthritis). This means that if a disabled person claims in winter or spring, they may truthfully state that their condition has impacted them to the extent required in the descriptors on over 50% of the days in a month. Yet a similar disabled person with exactly the same condition might not be entitled if they instead applied in the summer." - Inclusion Scotland
14. Thinking about the changes we have made to how we make decisions about fluctuating conditions, what impact do you think this is having on understanding the impact of a person's fluctuating conditions? Please give reasons for your answer.
Staff training and knowledge
"The systemic issues raised, such as legacy issues of trust in the system and limited opportunity to express the realities of your conditions beyond arbitrary figures such as the 50%, means that there is a lot more work to be done still to give people the confidence that fluctuating conditions will be considered effectively." - EEPPIC
15. If there was an opportunity to change any specific aspects of the fluctuating conditions criteria, what changes would you make (if any)?
15(a/b). If you proposed changes, what positive impacts/negative impacts could these have, and for who?
Two organisations called for introducing discretionary safety net criteria modelled on paragraph 4 of Schedule 9 of the Universal Credit Regulations 2013. As an alternative, ENABLE Scotland suggested a return to the principles outlined in "Moyna (Respondent) v. Secretary of State for Work and Pensions (formerly against the Social Security Commissioner) (Appellant)." Another safety net could be provided by using:
"the rules relating to DLA/CDP as an alternative route to entitlement. This would also provide a seamless transition from CDP to ADP and could avoid situations where entitlement is reduced where there has been no improvement in a person's condition." -Glasgow City Council
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