Work and insurance with M35.4
A rare disease is a difficult subject for institutions — DWP, HMRC, insurers and HR rarely recognise it. This guide shows the rights you have under the Equality Act 2010, the four parallel UK support routes (workplace adjustments, PIP, ESA, Access to Work), and what to collect from the first day of diagnosis.
Where you move.
Workplace rights
Reasonable adjustments under the Equality Act 2010 — remote work, flexible hours, equipment — what your employer must consider and how to ask effectively.
SSP, ESA, PIP, AtW
Statutory Sick Pay, New Style ESA, Personal Independence Payment and Access to Work — four parallel safety nets, each on its own assessment track.
Commercial insurance
What to do with life cover, critical illness cover, income protection and PMI after diagnosis. What to disclose, what not to — and when the underwriting window is already closed.
From diagnosis
to a stable situation.
Diagnosis and first fit note
Your GP or specialist issues a Statement of Fitness for Work (fit note). From 6 April 2026, Statutory Sick Pay is payable from the first day of sickness — the old three “waiting days” rule is removed. Start collecting every clinic letter, scan report and blood result.
Statutory Sick Pay from your employer
SSP is paid by your employer for up to 28 weeks of qualifying sickness — £123.25 per week from April 2026, or 80% of average weekly earnings (whichever is lower). Many employers pay contractual sick pay above SSP — check your contract.
Open the reasonable-adjustments conversation
The Equality Act 2010 places a duty on your employer to consider reasonable adjustments once they know about a long-term condition. M35.4 meets the “disability” definition once symptoms have lasted (or are expected to last) at least 12 months. Ask in writing.
SSP ends — claim New Style ESA
When SSP runs out you can claim New Style ESA if you have enough National Insurance contributions in the past 2–3 tax years. After a 13-week assessment phase and a Work Capability Assessment you go to the Work-Related Activity Group (£133.50/wk) or the Support Group (£145.90/wk).
Apply for PIP and Access to Work
PIP is non-means-tested: you must have had difficulties for 3 months and expect them to continue at least 9 more. If you are working or returning, Access to Work grants up to £69,260 per year for equipment, support workers and travel — separate from your employer's duty to make reasonable adjustments.
There is no single
“disability grade” in the UK.
Equality Act 2010
Workplace adjustments — no rating needed
- Reasonable adjustments: flexible hours, remote work, equipment
- Paid time off for medical appointments where reasonable
- Protection against disability-related dismissal and harassment
- Triggered by employer's knowledge of a 12-month+ condition
- Gatekeeper: your employer (with Occupational Health input)
Starting layer — kicks in the moment you tell your employer in writing.
Personal Independence Payment
Non-means-tested help with extra costs
- Daily living component — Standard £76.70/wk or Enhanced £114.60/wk
- Mobility component — Standard £30.30/wk or Enhanced £80/wk
- Independent of work status and earnings
- 3-month qualifying period + 9-month forward test
- Gatekeeper: DWP, assessed by a healthcare professional
Run the PIP claim in parallel with your sick-pay journey — there is no penalty for working while claiming.
New Style ESA
Income replacement when you can't work
- Assessment phase — paid at the assessment rate for ~13 weeks
- Work-Related Activity Group — £133.50/wk (2026)
- Support Group — £145.90/wk, no work-related activity required
- Requires sufficient National Insurance contributions
- Gatekeeper: DWP, Work Capability Assessment
Replaces SSP after 28 weeks if you still can't work.
Access to Work
DWP grant to stay in or return to work
- Equipment, software, ergonomic adaptations
- Support workers, BSL interpreters, mental-health support
- Travel to work where public transport is not workable
- Up to £69,260 per year (2025/26 cap)
- Gatekeeper: DWP, independent of employer's duty
Pays on top of the employer's Equality Act duty — not a substitute for it.
You have the right.
Now you need to ask.
Under the Equality Act 2010 your employer has a legal duty to consider reasonable adjustments once they know about a long-term condition. They don't have to grant every request — but they must engage with it, document the decision and give a defensible reason for any refusal.
"I have been diagnosed with a long-term condition — M35.4, eosinophilic fasciitis. I am requesting reasonable adjustments under the Equality Act 2010, specifically [remote working / flexible start time / a sit-stand desk]. I am happy to provide my Occupational Health report and to discuss what is workable."
"Please confirm the refusal in writing, setting out the specific reason and explaining why the adjustment would be a disproportionate burden within the meaning of the Equality Act 2010. I would also like to be referred to Occupational Health and, if appropriate, to apply for support through Access to Work."
"I am notifying you of my PIP award / Access to Work grant so we can review my reasonable adjustments and align the employer-paid items with the AtW-funded items. I would like to schedule a workplace assessment with Occupational Health to formalise the adjustments in my record."
What to collect from
the first day.
Before diagnosis
vs after diagnosis.
Insure yourself now.
- Level Term Life Insurance without autoimmune / rare-disease exclusions
- Income Protection with an “own occupation” definition (not “any occupation”)
- Critical Illness Cover — check the defined-condition list and severity-based wording
- Private Medical Insurance — verify connective-tissue and rheumatological conditions are not pre-excluded
Check what you already hold.
- Read existing policy wordings — look for “chronic”, “autoimmune” and “pre-existing” exclusion clauses
- Existing in-force policies generally cannot be cancelled because of a new diagnosis — that is your real protection
- New cover will likely be loaded or carry an M35.4 exclusion — negotiate the scope of the exclusion in writing
- Consider a broker who specialises in “impaired lives” or rare-disease underwriting — they know which insurers will look at the case