Nursing & Care News | Blog | Secure Healthcare Solutions

Getting behind the wheel changes once Parkinson’s becomes part of your life. For many people, driving a vehicle is not just a means of transport, but rather the school run, visits to grandchildren’s, and the independence that makes life feel ordinary. “Can I drive with Parkinson’s?” is one of the first thoughts that crosses after getting a diagnosis.

Fortunately, it is possible to drive while having parkinson’s. Many people have driven safely for many years while following DVLA rules and support along the way.

Can You Drive with Parkinson’s Disease in the UK?

Continuing to drive with Parkinson’s disease in the UK depends on how well your symptoms are managed. Parkinson’s is a progressive disease; each diagnosis has different symptoms, and it affects everyone differently. Some may experience mild symptoms for years, and some may go through severe symptoms right after the diagnosis. So, the DVLA bases its decision after reviewing the evidence and information from you and your medical team (GP, nurse, or consultant).

Driving requires mental and physical control of the body at once, quick decision-making, sustained focus, control over the vehicle’s wheel and pedals, and a high level of skill and ability. The driver should not be affected by any medical conditions or symptoms which can cause problems. This is why openness with the DVLA from day one is necessary, as it can protect you, the passenger and everyone on the road.

Driving Restrictions with Parkinson’s Disease and DVLA Rules

Once diagnosed with Parkinson’s, you are legally obliged to notify the DVLA; you must tell your licensing agency straight away, as it is a legal requirement.

What happens with your license?

It is entirely dependent on an individual’s circumstances
DVLA will ask about the conditions from your health professionals (GP, consultants, nurse).
DVLA will assess the level of deterioration and the course of the treatment and any changes made to it.

This information helps them make the decision. If possible, DVLA tries to keep people driving if it is safe for the driver, given their medical condition. If, after review, the DVLA decides driving isn’t safe for now, this isn’t necessarily the final word. If your licence is refused or taken away for medical reasons and you later become well enough to drive again, you can reapply for your licence.

How to Inform DVLA of Parkinson’s: A Step-by-Step Guide

Informing the DVLA about your condition is very straightforward and important too. Follow the steps below:

Form PK1: To inform DVLA of your condition, whether you’re a car driver or driving any other vehicle, you can fill out the Form PK1 and send it to DVLA, with the postal address included on the form.
Provide honest details: DVLA would want to know about how long you have had Parkinson’s, how it is affecting your daily life currently, and how it is treated now.
Expect contact with your medical team: If needed, the DVLA will ask for information about your condition from your health specialist. Sometimes, you are asked to take a medical examination (free of charge) with your GP or health specialist.
Be patient: It can be long before you get a decision, but you can keep driving in the meantime, if your GP allows.
Your GP is not responsible for this: Your GP is not legally required to inform the licensing agency about your condition. In a situation where you keep driving after your GP’s recommendation against it, the General Medical Council advises that a doctor must inform the licensing agency
Driving assessment: If needed, your licensing agency can request a driving assessment.

Skipping this step isn’t just risky; it’s a criminal offence. If you don’t let your licensing agency know about your condition, you’re committing a criminal offence.

What to Expect at a Parkinson’s Driving Assessment

Not everyone with parkinson’s will be asked for a driving assessment, but if you are asked to complete a driving assessment, you can expect the following things:

In very few cases, at the Driving and Vehicle Standards Agency test centre, you have to complete a driving assessment, which is a practical way of confirming your eligibility to drive and ensuring the safety and adjustments needed.
Assessment starts with a conversation about your medical and driving history. First, a basic physical assessment focusing on your limbs and joints, or a car mockup exercise to measure physical ability, reaction speed and strength. Paper-based tasks are used to measure your memory and cognitive skills, and vision tests, specific to driving.
These sessions are 2-3 hours long, and you can even take breaks if needed.
Once the assessment is finished, your assessor may tell you they’re happy with your driving, effectively meaning you’ve passed, or they may suggest you’d benefit from adaptations to your car. For example, moving the brake to the steering wheel unit if a tremor affects your braking foot. If things don’t go your way this time, don’t lose heart. You can always come back for reassessment.

After your visit, the assessors will write a comprehensive report which is sent to your home address.

Parkinson’s and Car Insurance: What You Need to Know

Along with the DVLA, your car insurer also needs to know about your condition. You must tell your car insurer, as it is a criminal offence to withhold the information and can lead to policy termination. Some car insurance companies may raise your premium or add extra charges. The British Insurance Brokers’ Association can help you find a fair deal and companies.

If your car needs adaptations and adjustments, you must tell your insurance company about it. Some policies require immediate notification, others only at renewal. Your policy booklet should state whether you need to tell your insurer about your medical condition immediately or at your next renewal

How Carers and Support Workers Can Help

When driving with Parkinson’s, family, friends, and carers play an important role in keeping your loved one safe for as long as possible. Carers can notice smaller, unnoticeable things about the person with Parkinson’s, such as a slower reaction, hesitation in driving, or increased fatigue after a short drive. Gently raising these observations and promptly starting a conversation about them with a GP can help a person with Parkinson’s.

Practical support can build up confidence and make the patient calm and reassured:

Help with completing DVLA forms
Keeping track of license renewal dates
Compassionate support at home
Being a familiar companion as a passenger

Specialist Parkinson’s Care in the UK from Secure Healthcare Solutions

Living well with Parkinson’s is not a single decision. It’s about having the right support through daily life, someone who understands the tremors, the freezing episodes, the medication timing, and the emotional weight that comes with a progressive condition. That’s where dedicated, person-centred care becomes invaluable.

Secure Healthcare Solutions provides experienced, compassionate Parkinson’s Care in the UK, tailored to each individual’s needs, from help with mobility and daily routines to companionship, medication support and respite for family carers. Whether driving remains part of someone’s life or not, the right care team can help preserve independence, dignity and quality of life at every stage of the Parkinson’s journey.

References

https://www.parkinsons.org.uk/information/travel-transport-mobility/informing-DVLA-DVA-licensing-agency
https://www.gov.uk/parkinsons-disease-and-driving
https://www.gov.uk/government/publications/pk1-online-confidential-medical-information

People with learning disabilities in the UK experience significantly worse mental and physical health outcomes than the general population. In many situations, people with learning disabilities die from potentialy tearable conditions. NHS England research says that only 37% of people with learning disabilities live longer than the age of 65, while the general population statistics are up to 85%.

So, it is important to have an annual health check to help you stay well. Talking about your condition or findings with your GP or nurse can help sort things out. In this blog, we will cover what annual health checks for learning disabilities are, why they are important, and what to expect during these checks.

What Are Annual Health Checks for Learning Disabilities?

Annual health checks are for people with learning disabilities aged 14 and over. This is an NHS enhanced service specially for people with learning disabilities who are on their GP’s learning disability register. In this annual health check, a GP or nurse generally review a person’s physical and mental health.

The check is more detailed and dedicated to the person than a standard check. Here is what it contains:

A review of physical and mental health
Checks for common conditions with learning disabilities: epilepsy, constipation, swallowing problems, vision and hearing issues.
A check for conditions such as those linked to Down’s syndrome.
A medication review under STOMP/STAMP programmes.
A check to see if the vaccinations are up to date, such as flu, pneumonia, and hepatitis B.

These annual health checks are not compulsory, it can only be conducted with the consent of the person taking them.

Why Learning Disability Health Checks Are So Important

Research from LeDeR’s reports suggests that individuals with learning disabilities(LD) die 19.5 years earlier, and it goes up to 26.8 years for severe/profound LD. LeDeR’s reports further show that asian and asian british backgrounds often die younger than white backgrounds. People in the most deprived areas living with a learning disability are more likely to die younger than those in the least deprived areas.

These situations remind us of the impact of health inequalities and why the annual health checks for learning disabilities are so important.

This annual check is designed to catch commonly missed or misdiagnosed conditions. The most recent NHS data suggest that in the year 2025/26, around 267,000 learning disability health action plans were completed for about 78% of those aged 14+ on the learning disability register.

What to Expect During a Learning Disability Health Check

The check should be carried out by someone trained appropriately (a GP or learning disability nurse) who understands how to communicate accessibly and avoid diagnostic overshadowing.

As per NHS guidance, the learning disability health check follows:

A discussion about general well-being and whether the person needs help staying well
Checks for conditions more common in people with a learning disability (epilepsy, constipation, dysphagia, vision, hearing)
A urine sample or blood test may be requested
A medicines review, to make sure the right medication is being given at the right time (and to check no one is being over-medicated unnecessarily – see STOMP/STAMP)
Height, weight, and general physical checks
A discussion of any worries the person or their carer wants to raise
At the end, the doctor or nurse produces a health action plan — a written record of any follow-up actions, referrals, or health promotion advice, which is reviewed and updated at the next check

How Carers and Support Workers Can Prepare

Confirmation of Registration: A person should be on the GP’s learning disability register to be eligible for the health check. A family/carer can ask the GP practice to add them.
Pre-health questionnaire: GP practice offers a pre-questionnaire beforehand, or you can ask for it in advance. Some ICBs send these out in advance to gather information from carers before the appointment.
Health Passport/Hospital Passport: A document containing information about an individual’s needs, communication style, and health history that can be shared with any health professional.
Request reasonable adjustments in advance: Based on a person’s needs and disabilities, you may ask for reasonable adjustments such as a quiet waiting area, the first or last slot of the day, easy-read materials, etc.
Prepare the person beforehand: NHS England and organisations such as West of England Learning Disability Collaborative produce easy-to-read guides and videos accessible to all.
Follow up on the health action plan: After the appointment, carers play a key role in making sure agreed actions (referrals, follow-up tests, lifestyle changes) are actually completed before the next annual review.

Reasonable Adjustments – Know Your Rights

Under the Equality Act 2010, disability is one of the nine protected characteristics. All public sectors and NHS England and NHS-funded organisations are responsible for, and have a legal duty to, make reasonable adjustments for disabled people. This is an anticipatory duty in which organisations are expected to anticipate needs before problems arise.

Equality Act 2010 accepts a person with a physical or mental impairment with a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities (learning disabilities, etc.) as a disabled person. This person is eligible for reasonable adjustments for annual health checks for learning disabilities under the Act.

A newer NHS-wide system confirms that it will let health care staff record, share and view a person’s reasonable adjustments for learning disabilities, so the staff can use this data for better and quicker preparations in the future. NHS and care providers in England must be able to use it by 30 September 2026. You can simply ask your GP for this information and about available adjustments.

How Secure Healthcare Solutions Can Help

Secure healthcare solutions as a provider that understands this enhanced service framework and can support GP practices, care homes, and services in identifying and registering eligible persons in the learning disability register.

Staff trained in learning disability and autism awareness can help with preparing for annual health checks and understanding reasonable adjustments, communication needs, and how to complete pre-check questionnaires. Furthermore, Secure Healthcare Solutions can ensure the health action plans are followed through between checks, since plans are only useful if actions are taken.

As one of the leading providers of Learning Disability Services in the UK, Secure Healthcare Solutions is committed to helping practices deliver consistent, person-centred care. Get in touch with our team today to find out how we can support your service in delivering high-quality annual health checks and ongoing care for people with learning disabilities.

References:

https://www.england.nhs.uk/statistics/wp-content/uploads/2021/06/C0962-i-annual-health-check-in-secondary-care-context-document.pdf
https://www.mencap.org.uk/press-release/mencap-responds-2023-leder-report
https://digital.nhs.uk/data-and-information/publications/statistical/learning-disabilities-health-check-scheme/england-march-2026
https://www.england.nhs.uk/learning-disabilities/improving-health/annual-health-checks/
https://digital.nhs.uk/services/reasonable-adjustment-flag
https://www.gov.uk/government/publications/reasonable-adjustments-a-legal-duty/reasonable-adjustments-a-legal-duty

Every behaviour tells a story. For autistic individuals, actions that others might find confusing or difficult are often a way of expressing unmet needs – whether that’s sensory overwhelm, frustration with communication barriers, or a response to an environment that feels unpredictable.

When we shift our perspective and view behaviour as communication rather than a problem to be managed, we open the door to more compassionate, effective support. This is the foundation of Positive Behaviour Support (PBS) – a framework used across UK care and support services to work alongside autistic people.

In this guide, we explore what positive behaviour support is, how it works in practice, and how it can make a meaningful difference for autistic children and adults.

Autism affects an estimated 1 in 100 people in the UK, and many autistic people also have a learning disability – the population PBS was originally developed to support.

PBS grew out of Applied Behaviour Analysis (ABA), but the two are not the same: PBS is built around understanding the whole person and their environment, not just modifying isolated behaviours.

What Is Positive Behaviour Support?

Positive Behaviour Support is a person-centred, values-led framework rooted in behavioural science. Rather than focusing on reducing unwanted behaviours through punishment or restriction, PBS seeks to understand why a behaviour occurs and address the underlying causes.

At its core, PBS asks: What is this person trying to tell us, and how can we help them lead a better life?

The approach is set out by the PBS Academy, the UK body responsible for PBS training standards, and aligns with NICE guideline NG11 on behaviour that challenges, alongside NICE guideline NG170 on autism management. It is delivered within services regulated by the Care Quality Commission. It’s built on three pillars:

Understanding – Using functional assessments to identify the triggers, needs, and environmental factors behind a behaviour.
Prevention – Making proactive changes to a person’s environment, routines, and support to reduce distress before it escalates.
Quality of life – Prioritising outcomes that genuinely matter to the individual, from improved relationships to greater independence.

PBS is typically delivered by a mix of behaviour analysts or specialist PBS practitioners, learning disability nurses, and support workers trained specifically in the framework – not by any single professional working alone.

How PBS Helps with Behaviour That Challenges in Autism

Self-injury, withdrawal, distress outbursts, difficulty with transitions – these are the behaviours PBS is most often used to support in autism. They are not deliberate acts of defiance. They are signals that something in a person’s world isn’t working for them.

Research funded by the National Institute for Health Research estimates that around 1 in 5 adults with a learning disability display behaviour that challenges – one of the reasons PBS has become such a widely used framework in UK care and support services.

Positive Behaviour Support addresses this by:

Identifying triggers such as sensory overload, sudden changes in routine, or communication breakdowns.
Building skills that give the individual alternative ways to express their needs, including visual communication tools, social stories, or sign language support.
Adapting environments to reduce sensory stressors, creating predictable routines, and establishing safe spaces.
Training support teams so that everyone around the individual responds consistently and with empathy.

PBS doesn’t use restraint or punishment as strategies. It replaces reactive approaches with proactive ones – fewer crises and a calmer daily experience for everyone involved.

This shift also connects to NHS England’s STOMP initiative (Stopping Over-Medication of People with a learning disability, autism, or both), which has driven a national reduction in unnecessary psychotropic medication by supporting proactive, non-drug approaches like PBS instead.

What’s Included in a Positive Behaviour Support Plan?

A positive behaviour support plan is a personalised document developed collaboratively with the individual, their family, and their care team. No two plans look the same, because no two people are the same. However, most plans include:

A person-centred profile – strengths, preferences, communication style, what matters most
A functional assessment – the context, triggers, and meaning behind behaviours of concern
Proactive strategies – environmental adjustments, structured routines, or a sensory diet (planned sensory input, such as movement breaks or quiet time, to help regulate the nervous system)
Reactive strategies – calm, safe, de-escalation responses if distress occurs, always the least restrictive option
Outcome measures – to track whether the plan is genuinely improving the person’s wellbeing

The plan is a living document, reviewed and updated as needs evolve – typically every three to six months, or sooner if circumstances change.

Key Benefits of Positive Behaviour Support for Autistic People

Done well, PBS can lead to greater independence, improved two-way communication, calmer daily routines, and – as outlined above – reduced reliance on restraint, seclusion, or unnecessary medication.

These benefits depend entirely on consistent, well-trained delivery; a poorly implemented plan rarely achieves any of them.

A Balanced View: Evidence, Training and Person-Centred Care

It’s worth being upfront here: PBS isn’t without debate, and a genuinely balanced guide shouldn’t present it as though it is.

The National Autistic Society itself has noted concerns some autistic people and advocates raise – that behaviour-focused approaches can, in the wrong hands, feel less like support and more like an attempt to make someone perform “less autistic.” The evidence base is also still developing – much of the strongest research comes from learning disability populations rather than autism specifically.

The risks of poor implementation aren’t hypothetical: the CQC’s own “Out of Sight – Who Cares?” review found examples of PBS plans that were poorly written, inconsistently followed, or missing key information about the person’s needs.

This is precisely why the quality of delivery matters as much as the framework itself. Positive behavioural support training for carers and support workers is essential – staff need to understand the values behind PBS, carry out functional assessments properly, and apply strategies with empathy and consistency.

Organisations such as BILD and the Restraint Reduction Network set the wider UK standards for reducing restrictive practice that good PBS training should reflect.

At its best, PBS is collaborative and led by the individual’s voice. It works alongside the autistic person – never over them.

Getting Started with PBS Support

If you’re considering PBS for autism support for a loved one, here are some practical first steps:

Request a referral to a specialist PBS practitioner through your local authority, clinical commissioning group, or a registered care provider.
Gather information about the individual’s history, preferences, triggers, and current support arrangements.
Involve the individual and their family at every stage – their insights are invaluable and must guide the process.
Ask about training – Ensure that everyone in the support network receives appropriate positive behavioural support training.
Review regularly – A good PBS plan evolves with the person. Schedule regular reviews to measure progress and adapt strategies.

How Secure Healthcare Solutions Can Help

At Secure Healthcare Solutions, we provide specialist learning disability and autism support for children and adults across the West Midlands and beyond. Our team of trained support workers and healthcare professionals deliver person-centred care that is guided by the principles of Positive Behaviour Support.

We understand that every person is unique, and we take the time to develop tailored support plans that reflect individual strengths, needs, and goals. Whether you need domiciliary care, complex care support, or staffing for a residential setting, our team is here to help.

References

https://www.nice.org.uk/guidance/ng11
https://www.nice.org.uk/guidance/cg170
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8767693/
https://www.autism.org.uk/advice-and-guidance/positive-behaviour-support-pbs
https://www.cqc.org.uk/publications/themed-work/rssreview
https://restraintreductionnetwork.org/

It’s Monday morning at a GP surgery in the West Midlands. Two doctors have called in sick. There’s a full day of patient appointments on the books, and the phone won’t stop ringing. The practice manager has one option – call a healthcare staffing agency for locum GP cover.

Locum GPs are doctors who provide short-term clinical cover at GP practices. They aren’t a stopgap. They’ve become a key part of how primary care works in the UK. And as the GP shortage grows, their role matters more than ever.

The Scale of the UK’s GP Workforce Crisis

The numbers are stark. As of December 2025, just 38,220 full-time equivalent GPs worked in NHS general practice in England. But that number alone hides a deeper problem.

The Workforce Paradox – More Licensed GPs, Fewer Working in the NHS

GP training remains competitive, with applications continuing to rise year on year. Yet the NHS still struggles with GP recruitment.

New research found that between 2015 and 2024, for every five new GPs licensed, the NHS lost one full-time equivalent GP. By 2024, one in three licensed GPs no longer worked in NHS general practice.

The reasons are clear. Workloads are too high. Running costs keep rising. The partnership model is breaking down. Many GPs now prefer portfolio careers, private practice, or work abroad.

This creates a real paradox. Practices can’t fill GP vacancies. At the same time, newly qualified GPs can’t find permanent NHS posts.

Rising Patient Demand vs Shrinking GP Capacity

Patient needs keep growing. The average GP now looks after 2,257 patients – up 15% since 2015. The number of GP practices has dropped to 6,229. That’s a loss of over 1,000 practices in eight years.

An ageing population, rising long-term illness, and the post-pandemic backlog all add pressure. The current NHS workforce cannot keep up. The King’s Fund notes that rural, coastal, and deprived areas face the worst shortages. In these regions, locum cover is often the only way to keep services running.

How Locum GPs Are Bridging the Gap in Primary Care

Locum GPs now play a central role in keeping primary care safe and open.

Immediate Cover When It’s Needed Most

When a GP is off sick, on leave, or a post sits empty, a locum can step in fast. One unfilled GP session can mean dozens of appointments cancelled in a single day. Left unfilled, gaps like this compound – patient access suffers, and the pressure falls on the rest of the team.

Good staffing agencies keep a pool of checked, ready GPs. They can provide same-day or next-day cover. This stops clinics from closing and takes pressure off the team.

Supporting Practices Under Pressure

Locum GPs also help practices in trouble. The Care Quality Commission (CQC) may flag a surgery for unsafe staffing. In these cases, locum cover can steady the ship while the practice recruits.

Research shows locum use is higher in struggling practices. Extra clinical hands help meet patient safety standards. Healthwatch England flags patient access as a top concern. Locum GPs tackle this head-on by keeping doors open.

Choosing the Right Locum GP Staffing Agency

Not all agencies are the same. Practices and integrated care boards (ICBs) should check for strong compliance. This means the General Medical Council (GMC) checks, enhanced DBS screening, right-to-work proof, valid indemnity, and current appraisal records.

Speed matters too. The best agencies fill shifts fast from a deep pool of vetted GPs. They don’t scramble to recruit at the last minute.

Look for primary care know-how. The agency should know EMIS Web, SystmOne, and Vision. They should grasp the Quality and Outcomes Framework (QOF), enhanced services, and PCN targets.

Continuity of care is a common worry with locum use. Good agencies fix this by sending the same GPs back to the same practices. This builds trust with patients and staff. And for most practices, a locum session is often less costly than the disruption a cancelled clinic creates.

The Benefits of Locum GPs – For Practices, Patients, and GPs

For practice managers and Primary Care Network (PCN) leads, the gains are clear. Locum cover means no cancelled clinics and no burned-out colleagues. The agency handles hiring, compliance, and payroll. Practices can scale up during winter, flu season, or QOF deadlines.

Every locum should be fully checked: GMC-registered, on the National Performers List, DBS-cleared, with valid indemnity and up-to-date revalidation. Patient safety stays high because the same standards apply as for permanent staff.

For patients, it’s simple – they can still see a doctor when they need one.

For GPs, locum work fits a modern portfolio career. Some work part salaried, part sessional, part in teaching or research. This keeps them in the NHS rather than leaving for good. GP retention improves, and the NHS keeps their clinical skills.

What the 2026/27 GP Contract Means for Locum Staffing

The Department of Health and Social Care (DHSC) has made changes that support flexible staffing. NHS England’s 2026/27 GP contract moved £292 million from the PCN-level Capacity and Access Payment (CAP) to a practice-level fund. This gives each practice more control over how it boosts capacity – including paying for locum sessions.

The Additional Roles Reimbursement Scheme (ARRS) has also been expanded. PCNs can now recruit GPs at any career stage, not just those within two years of qualifying – a welcome flexibility, though it doesn’t solve the longer-term need for permanent GP partners.

The RCGP keeps pushing to cut red tape. Admin burden drives burnout and makes GPs leave. Locum GPs help here too. They handle clinical work while permanent staff deal with targets, governance, and planning.

How Secure Healthcare Solutions Can Help

Secure Healthcare Solutions is a CQC-registered healthcare staffing agency that has worked across primary care since 2015. Today we support over 200 organisations across the West Midlands and England, with a compliance-checked pool of GPs alongside our 200+ nursing staff and 500+ healthcare assistants.

We handle GMC checks, National Performers List verification, DBS screening, and indemnity confirmation before a locum ever sets foot in your practice – so you get fast, compliant cover without the admin. Whether you’re a practice manager needing urgent GP cover or a GP looking for flexible sessional work, get in touch today.

Sources

digital.nhs.uk/data-and-information/publications/statistical/general-and-personal-medical-services
health.org.uk
kingsfund.org.uk
england.nhs.uk

Some conditions reshape a person’s entire life through daily, minor, or ordinary routines. Neurogenic bowel is one of them. For those living with neurological conditions across the UK, it is a reality that millions navigate every single day – often in silence, and often without the support they truly deserve.

At Secure Healthcare Solutions, we believe that understanding a condition fully is a first step toward managing it with confidence. This guide is for their families, carers, and those who are living with neurogenic bowel.

What Is Neurogenic Bowel?

Neurogenic bowel is a condition or dysfunction in an individual with neurological disease or injuries, failing to evacuate the bowel or failing to contain the stool. This is not a condition but rather a consequence of damage or a disease affecting the nervous system.

The bowel is a sophisticated organ. It follows a series of nerve signals between the brain, the spinal cord, and the muscles of the gut, which keep the bowel functional and allow us to maintain control over when and where to empty the bowel. The profound impact of neurogenic bowel on the quality of life deserves an open conversation about how it changes your daily routines.

Neurogenic Bowel Symptoms

The bowel, without nerve control and normal functioning, can swing between extremes. Living with neurogenic bowel, maintaining a shifting landscape of symptoms can be challenging.

Neurogenic symptoms that affect your daily routine:

Constipation: It is the most common effect of neurogenic bowel. A UK postal survey of spinal cord-injured individuals found that up to 30 minutes was spent on each bowel care episode by 58% of respondents, with 22% spending between 31 and 60 minutes, and 14% spending over an hour.
Faecal Incontinence: This symptom causes the most psychological burden on a person, causing unexpected and unwanted passing of stool. Within the spinal cord injury population, 75% experience faecal incontinence.
Abdominal Symptoms: Neurogenic bowel dysfunction often causes a range of upper and lower abdominal symptoms such as cramping, pain, nausea, and a general feeling of discomfort in the abdomen.

Neurogenic Bowel Causes and Risk Factors

Neurogenic Bowel can cause different symptoms in each individual, which is why understanding its causes and risk factors is important. The cause is always a neurological disruption of the brain nerves that control the bowel.

This disruption can occur in many ways:

Spinal Cord Injury: The spinal cord acts as the main communication bridge between the nervous system and the bowel. The injury due to traumatic or non-traumatic causes can interrupt the communication. Spinal cord injury, both traumatic and non-traumatic, has an estimated prevalence of 15 per million in the UK.
Multiple Sclerosis(MS): MS is a progressive condition that affects the brain’s central nervous system and disrupts the brain signals. Within the MS population, it is usually estimated that a minimum of two-thirds suffer from bowel symptoms.
Parkinson’s: The loss of nerve cells in Parkinson’s disease weakens the autonomic nervous system, which governs bowel functions.
Stroke: The brain damage from strokes can result in constipation and faecal incontinence, sometimes resulting in permanent symptoms.
Neurological Conditions: Brain injuries and various forms of peripheral nerve damage can all lead to neurogenic bowel dysfunction.

Types of Neurogenic Bowel Dysfunction

Neurogenic bowel is typically classified into two types of dysfunction based on which part of the brain’s nervous system is damaged:

Upper Motor Neurone (UMN) / Reflexic Bowel

Reflexic Bowel occurs when the sacral region of the spinal cord (above S2-S4) is damaged. It affects the enteric nervous system, which connects the brain and the bowel’s own local network.

Due to this condition, the bowel retains automatic reflex activity, and voluntary control is lost. This results in constipation and hard stools. This is the type most commonly associated with cervical and thoracic level spinal cord injuries.

Lower Motor Neurone (LMN) / Areflexic Bowel

Areflexic bowel occurs when damage affects the sacral spinal cord or peripheral nerves, leading to the bowel. The bowel loses muscle tone, and the stool cannot move effectively, causing severe constipation. The anal sphincter may also become weak, which can lead to accidental stool leakage.

Understanding which type of dysfunction a person has guides everything from the techniques for bowel care to the medications prescribed and the management of outcomes.

How Neurogenic Bowel Is Diagnosed

Diagnosis of neurogenic bowel is a process rather than a single test, which may require a range of assessments and a thoughtful conversation between the patient and their clinical team.

Clinical History: Patient’s bowel history is taken carefully, exploring the nature, consistency, and frequency; symptoms such as bloating, pain; the impact on daily life. Assessment of prior bowel function is complete.
Neurogenic Bowel Dysfunction (NBD) Score: The NBD Score is a validated questionnaire that identifies the severity of the symptoms and is useful for initial assessment.
Imaging and Specialist Tests: In some cases, imaging such as plain abdominal X-rays may be used to assess faecal loading. Anorectal manometry, colonic transit studies, and neurophysiological tests may be arranged for more complex cases or where surgical intervention seems necessary.
Multidisciplinary Assessment: For many people, the most effective diagnostic and management pathway is delivered through a multidisciplinary team. In the UK, specialist centres such as spinal cord injury units typically have established pathways for this kind of comprehensive assessment.

Neurogenic Bowel Management

To manage neurogenic bowel, we need to find the right daily routine. A predictable, effective, and dignified routine that allows a person to get on with their life with as much independence and confidence as possible.

Conservative Management: The Foundation: The first-line approach includes:
- Regular bowel routines timed after meals.
- Suppositories and enemas to stimulate bowel emptying.
- Digital rectal stimulation (DRS) for reflex bowel evacuation.
- Digital removal of faeces (DRF) for severe impaction.

Transanal Irrigation (TAI)
- TAI uses warm water introduced into the bowel through a rectal catheter or cone to achieve controlled evacuation. It improves symptoms and quality of life in many patients when conservative methods fail and is supported by NICE guidance in the UK.

Medications
- Laxatives for constipation.
- Anti-diarrhoeal agents (e.g., loperamide) for faecal incontinence.
- Treatment should be tailored to the individual’s neurological condition.

Bowel Care Support at Home

Bowel care is a deeply personal territory that requires a level of trust, skill, and sensitivity. For people with neurogenic bowel, the majority of their care takes place at home, with the support of their family member or professional carer. Life with neurogenic bowel can be lived fully and actively if practical and professional help is given with the right management plan.

At Secure Healthcare Solutions, we provide specialist bowel care in Wolverhampton and across the West Midlands for people living with neurological conditions. Our compassionate, highly trained carers deliver personalised support that promotes comfort, dignity, and independence. If you or a loved one needs specialist care at home, we’re here to help.

Dementia can be very challenging and has many types and different conditions in each individual. It is generally caused by damage to brain cells. If you feel anxiety, agitation, and confusion after a certain period of time in the day or in the late evening, you are not alone. This is a common feature of dementia recognised by clinicians across the UK.

This guide will help you understand what sundown syndrome is, how to handle the difficult situations for the person with dementia or for those helping them.

What Is Sundowning in Dementia?

Sundowning, often called sundown syndrome or late-day confusion, occurs in the late afternoon and evening in people living with dementia. This is a cluster of symptoms caused by dementia.

Around 9,00,000 people in the UK are currently living with dementia. One out of five people with Alzheimer’s disease has sundowning. Around 20% of people with dementia have a chance of having sundown syndrome. Sundowning can persist from late afternoon into the night, lasting till early morning. Summer days can be harder as well, due to long hours of light.

It can also happen in a person without dementia who is experiencing delirium, a temporary state of confusion caused by infection, hospitalisation, or medication reaction. Same-day GP assessment is recommended if there is confusion about the cause of sundowning dementia.

What Are the Symptoms of Sundowning?

Sundowning has different effects on different people, and even the symptoms can vary every day. It is often described as changes in mood or personality as the sun goes down. Understanding the range of symptoms can help identify and support the condition early on:

Behavioural Symptoms

Restlessness, gets agitated, or walks back and forth
Repeated questioning
Aggressive behaviour (Verbal or rarely physical)

Psychological and Emotional Symptoms

Becomes distressed or anxious suddenly
Sudden mood changes (anger, tearfulness, irritation)
Suspicious thinking, believing people are not who they are, etc.

Cognitive Symptoms

Difficulty in communication, finding the right words
Worsened confusion or disorientation
Unable to recognise familiar surroundings

Physical Symptoms

Sleep problems, falling asleep or staying asleep at night.
Wringing hands, fidgeting, rocking
Becoming hungrier in the evening

What Causes Sundowning in Dementia?

The precise course of sundowning has not yet been identified; however, research in this area continues. There is also a growing clinical consensus that it arises from a combination of neurological, psychological, and environmental factors.

Here are some widely supported explanations for the causes of sundowning:

Disrupted Circadian Rhythm

Circadian rhythm regulates the body’s sleep and wake cycle, so in people with Alzheimer’s or any other form of dementia, which damages the brain, involving the hypothalamus, which is responsible for Circadian Rhythm.

This disruption can cause people to have difficulty distinguishing between day and night, resulting in sundowning dementia.

Reduced Light and Increased Shadows

Environmental changes can be profoundly disorienting for a person with dementia as the daylight fades, dimming lights and darker places.

Neurodegeneration and Brain Changes

Dementia causes progressive damage to a person’s brain. It affects a person’s ability to process emotions, manage behaviour, and information. So, in the evening or as the day ends, a person becomes more fatigued and vulnerable to sundowning.

Fatigue and Cognitive Exhaustion

Dementia demands more mental stress to navigate throughout the day; it can affect your body and mind. By afternoon, this cumulative fatigue can become overwhelming, reducing the brain’s capacity to handle simulations.

What Triggers Sundowning?

Neurological changes are a common reason for sundowning, but day-to-day triggers can help determine if an episode will occur or how severe it will be. Identifying these triggers can be the most practical step families of caregivers can take.

Physical Triggers

Hunger
Physical pain
Side effects of medication or medications wearing off in the evening
Dehydration (most common in older adults)

Environmental Triggers

Daylight fading, dim lights and shadows indoors
Changes in usual routine
Crowded or noisy environments

Emotional Triggers

Unresolved stress or anxiety
Feeling ignored, rushed or misunderstood
Loneliness, boredom, or lack of meaningful engagement

How to Manage Sundowning in Dementia

There is no single treatment that cures sundowning, but a range of evidence-informed approaches can significantly reduce the frequency and severity of episodes.

The following are tips to manage sundowning dementia:

Maintain a consistent daily routine
Maximise daytime light exposure
Adjust indoor lighting as the day progresses
Schedule demanding activities earlier in the day
Manage stimulation carefully
Address physical needs proactively

Evening Routine Tips to Help Calm Symptoms

A thoughtful evening routine can transform sundowning hours into calmer hours to help calm your sundowning symptoms.

You can create a calm and familiar environment by keeping familiar objects, such as loved ones’ photos and cherished ornaments. Play familiar music at low volume; music creates a calming effect. Engage in activities that make you feel connected to your cherished moments or positive memories. Also, having a pet can make you feel reassured.

While taking care of a person with sundowning dementia, avoid arguing or trying to make them understand the situation; speak simply. Offer gentle reassurance and distractions rather than confrontation. Keep the bedroom quiet and at a comfortable temperature, free from stimulating screens or lights. Discourage long daytime naps and taking tea or caffeine after evening.

Sundowning often ends with a long and demanding day for family carers. Reaching out for support, whether from family, a local carer support group, or a professional organisation such as Dementia UK or the Alzheimer’s Society, is not a sign of weakness but an essential part of sustaining the care you provide.

When to Speak to a GP or Dementia Specialist

Sundowning dementia is a common aspect of dementia; there are circumstances where immediate medical attention is needed.

Seek Same-Day GP Advice If:

Significant changes from the usual pattern
Delirium requires urgent assessment
Infections, such as a urinary tract infection, can cause acute and dramatic deterioration in people with dementia
Intensified rapid hallucinations
If a person refuses to eat and drink or take medications
Risk of harming others or themselves

In the UK, you are entitled to an annual review with your GP if you have dementia. Carers should take notes about sundowning dementia patients’ episode triggers and factors that have a severe effect on the patient. These notes can help the GP assess the sundowning symptoms and causes.

Dementia Care and Support at Home

For many people in the UK, staying at home is strongly preferred. Research consistently shows that familiar surroundings, established routines, and the presence of known faces are among the most powerful factors in reducing confusion and distress in people with dementia, including sundowning. Achieving safe and sustainable home care, however, often requires a combination of family support, professional care, and access to specialist expertise.

When selecting a home care provider, families should look for providers whose care staff have specific dementia training, and who can demonstrate experience in managing behavioural symptoms such as sundowning.

Secure Healthcare Solutions in Wolverhampton provides specialist dementia care tailored to the needs of individuals and their families across the UK. Our care professionals are trained to understand the complexities of dementia behaviour, including sundowning, and to respond with the calm, consistent and person-centred approach that makes a genuine difference to daily life.

References:

https://www.dementiauk.org/
https://www.alzheimers.org.uk/

Every year, around 15,000 people in England and Wales require a tracheostomy – and for many of them, going home means taking this clinical need with them. Suctioning is at the heart of that daily care. Do it well, and life stays manageable. Miss the signs, or rush the technique, and things can deteriorate faster than most people expect.

Whether you’re a community nurse visiting a patient for the first time post-discharge, a family carer who’s just been handed a portable suction machine and a care plan, or an HCA freshening up your knowledge – this guide walks you through the tracheostomy suctioning procedure from start to finish: what it is, why it matters, and how to do it safely.

What Is Tracheostomy Suctioning – and Why Is Tracheostomy Airway Management So Critical?

Tracheostomy suctioning is the clinical procedure of passing a sterile catheter through a tracheostomy tube to remove secretions and maintain a patent airway. It is one of the most fundamental aspects of tracheostomy airway management.

When someone has a tracheostomy, their airway bypasses the nose and mouth entirely. The nose normally warms, filters, and moistens incoming air – without it, secretions thicken, pool in the trachea, and many patients simply cannot cough them clear. The tracheostomy stoma and tube itself can also increase mucus production, adding to the burden.

Left unmanaged, those secretions block the tube, drop oxygen levels, and quickly become a breeding ground for infection. In our experience at Secure Healthcare Solutions, carers who understand why they’re suctioning – not just how – respond far more calmly when a patient becomes distressed.

Signs That Tell You Suctioning Is Needed

The key signs that a tracheostomy needs suctioning include:

Audible bubbling or gurgling from the tracheostomy site
A drop in oxygen saturation (SpO₂) from the patient’s normal baseline
Visible secretions at the opening of the tube
Increased breathing effort — use of accessory muscles, restlessness
The patient pointing to their throat or appearing to struggle
Coughing that isn’t shifting anything

There is no fixed suctioning schedule. Frequency is based entirely on clinical assessment – some patients need it several times a day, others far less. Always encourage the patient to cough first; an effective cough is preferable to suction.

Open vs. Closed Tracheostomy Suctioning: Which Applies to Your Patient?

In community and home care settings, open suctioning is the standard method. If your patient is on a home ventilator, their care plan will specify closed suctioning – and you will have been trained on this before discharge.

Open suctioning disconnects the patient from any humidification or ventilator circuit. It works well but carries a slightly higher risk of deoxygenation and infection if technique is poor.

Closed (in-line) suctioning keeps the catheter within a sealed system – no disconnection, less contamination risk, less oxygen loss. Used primarily for ventilated patients.

Whichever method applies, maintaining adequate humidification via an HME (heat and moisture exchanger) is essential – it reduces secretion thickness and makes suctioning less frequent and less traumatic.

Choosing the Right Tracheostomy Suction Catheter Size

The correct tracheostomy suction catheter size should not exceed half the internal diameter of the tracheostomy tube – this is the standard rule across NHS trust guidelines. As a practical guide, most adult patients in the UK will use sizes 10, 12, or 14 FG, but the exact size must always be confirmed from the patient’s tracheostomy passport, where it is documented by the discharging hospital team.

The Tracheostomy Suctioning Procedure: How to Suction a Tracheostomy Safely

Before you begin, explain what you’re about to do. Even patients who can’t respond verbally are aware, and a calm explanation reduces distress for everyone in the room.

Wash hands and put on gloves, apron, and eye protection
Check equipment — suction pressure set to 80-120 mmHg for adults, correct catheter size
Assess first — check SpO₂, listen, observe. Is suctioning actually needed right now?
Pre-oxygenate if indicated — as per the care plan
Attach catheter to suction tubing without activating suction
Insert gently using a shallow technique — to the tip of the tube or 1-2 cm beyond. Deep suctioning risks carina trauma and is not recommended in community settings
Apply suction on withdrawal only — rotating motion, no more than 10-15 seconds per pass
Rest between passes — 20-30 seconds minimum, watch SpO₂ recover
Repeat if needed — maximum 3 passes; beyond that, stop and reassess
Flush and dispose — sterile water flush, single-use catheters discarded after the episode
Document — colour, consistency, volume, patient tolerance, SpO₂ before and after

A note on saline instillation: routine use of saline before suctioning is no longer recommended by current UK guidance unless specifically directed by the patient’s care team.

Complications of Tracheostomy Suctioning – and How to Stay Ahead of Them

The main complications of tracheostomy suctioning – hypoxia, mucosal trauma, infection, cardiac arrhythmia, and patient distress – are mostly preventable with correct technique.

Hypoxia — limit suction duration, pre-oxygenate where indicated
Mucosal trauma or bleeding — correct catheter size, never force the catheter
Infection — strict Aseptic Non-Touch Technique (ANTT) every time; never reuse single-use catheters
Vagal response / cardiac changes — deterioration mid-procedure: stop immediately
Anxiety and distress — talk throughout; never work in silence

Escalate immediately if:

SpO₂ remains low after suctioning
Frank blood in secretions
Catheter cannot be passed
Tube appears blocked and won’t clear

→ Call 999. The emergency tracheostomy box lives at the bedside for a reason.

Tracheostomy Care at Home: What Families and Carers Need to Know

Family members and home carers can perform tracheostomy suctioning safely – and in the UK, they are trained by specialist nurses before discharge. You should not go home without that training and the right equipment in place.

A few things experienced home-care teams know well:

The Tracheostomy Passport — a formal NHS document developed in line with National Tracheostomy Safety Project (NTSP) guidance — records tube type, catheter size, humidification needs, and emergency instructions. It goes everywhere with the patient.
Secretions that change colour, thicken significantly, or develop an odour suggest possible infection — contact the GP or community team promptly.
Home suction machines need regular checks. Know who to call if equipment fails out of hours.
If secretions suddenly thicken, check the HME filter is in place and functioning.
In the longer term, some patients are assessed for decannulation — removal of the tracheostomy tube. This is a specialist multidisciplinary decision, not a community one.

Tracheostomy Care in Wolverhampton: How Secure Healthcare Solutions Can Help

Tracheostomy suctioning looks straightforward on paper – but the judgment around when to act, how to read the patient, and when to escalate takes experience. That’s something no checklist fully replaces.

At Secure Healthcare Solutions, we provide specialist tracheostomy care in Wolverhampton and across the surrounding community – from suctioning and airway management to tube changes and dedicated home care plans. Our trained team supports patients and families through every stage of tracheostomy care at home, so hospital discharge feels like a transition, not a cliff edge. Get in touch with our team today to discuss your needs.

References:

https://tracheostomy.org.uk/
https://www.nhs.uk/tests-and-treatments/tracheostomy/

Skin irritation around a stoma can start with something that seems small: a faint itch under the pouch, a slight sting during cleaning, or a red patch that appears after a leak. But peristomal skin can deteriorate quickly if faeces or urine sits against it. A systematic review found that peristomal skin complications affect between 36.3% and 73.4% of people following stoma surgery, which shows how common these problems can be.

The skin around a stoma is called peristomal skin. It should not feel sore, itchy, wet, burning or painful. If it does, it is usually a sign that something needs attention, such as a leak, poor pouch fit, trapped moisture, adhesive damage or irritation from a product.

For mild skin irritation, remove any leaking pouch, clean the skin gently with warm water, dry it completely and check that the pouch opening fits closely around the stoma. If irritation continues, worsens or the skin becomes broken, contact your stoma care nurse.

How to Treat Skin Irritation Around a Stoma

The most important part of treating skin irritation is finding the cause. If the same sore patch keeps returning, look carefully at where it appears. A ring of soreness close to the stoma often suggests output is touching the skin. Redness in the shape of the adhesive may suggest trauma from removal or sensitivity to a product.

When you first notice irritation:

Remove the pouch gently. Support the skin with one hand and slowly peel the adhesive away with the other.
Check the back of the pouch. Look for output under the flange or baseplate.
Clean with warm water only unless advised otherwise. Avoid scrubbing sore skin.
Dry the skin fully. Even slight dampness can stop the pouch from sealing properly.
Check the pouch opening. It should sit close to the stoma without rubbing it or leaving surrounding skin exposed.
Do not patch over a leak. Extra tape may hide the problem while output continues to damage the skin underneath.

In practice, one of the most useful checks is the back of the removed pouch. If the same area of adhesive is repeatedly damp or eroded, it often shows where the seal is failing. This can give a stoma care nurse clearer information than simply saying the pouch “keeps leaking”.

Barrier films, stoma powders and protective seals can be helpful in some situations, but they are not a cure-all. Too much powder or product can prevent the pouch from sticking. If you are unsure how to heal sore skin around a stoma, ask your stoma care nurse before changing products.

Common Causes of Skin Irritation Around a Stoma

Leakage is one of the most common reasons for sore skin around a stoma. Stoma output can be irritating, especially if it sits under the pouch adhesive. Once the skin becomes sore or moist, the pouch may stick less well, which can cause more leakage.

A poorly fitted pouch is another common issue. The stoma can change size after surgery, during weight changes or if the shape of the abdomen changes. Skin folds, scars, swelling, a flush or retracted stoma, and a parastomal hernia can all affect the seal.

A common pattern in home care is soreness returning in the same place, such as one side of the stoma or underneath a skin fold. This often suggests a fit or body-shape issue rather than a general skin problem.

Other causes include removing the pouch too quickly, trapped moisture or sweating, using too much powder or barrier product, sensitivity to adhesives, hair follicle irritation, existing skin conditions, or possible infection.

Itchy skin around a stoma can be an early warning sign. In home-care settings, carers often notice that people mention itching before they see an obvious leak. If itching keeps returning under the same part of the pouch, it is worth checking the seal and discussing it with a stoma care nurse.

How to Prevent Skin Irritation Around a Stoma

Good stoma skin care is built around routine and observation. The aim is to notice small changes before they become painful.

Check the skin at every pouch change. Look for soreness in the same place, damp skin, adhesive residue or signs that output has crept under the baseplate. Empty the pouch before it becomes too heavy, as the weight can pull on the seal.

Regularly remeasure the stoma, especially after surgery, weight changes or changes in abdominal shape. A template that fitted well a few months ago may no longer be right.

Helpful habits include:

Removing the pouch slowly
Drying the skin fully before applying a new pouch
Avoiding unnecessary product layers
Keeping supplies in a cool, dry place
Recording repeated leaks or irritation
Asking for a pouch review if leaks happen often

Small patterns matter. Repeated leaks overnight, after meals or during movement can give your stoma care nurse useful clues. Care teams also often notice that irritation is worse when pouch changes happen under pressure, such as before leaving the house or late at night.

When to Contact Your Stoma Care Nurse, GP or NHS 111

Contact your stoma care nurse or GP if irritation does not improve, keeps returning or prevents the pouch from sticking securely. You should also seek advice if the skin becomes painful, broken, wet, bleeding or weeping.

You should also request a review if you notice frequent pouch leaks, new ulcers, unusual skin growths or a sudden change in the stoma’s size, shape or position. If possible, take a clear photograph during a pouch change so your nurse can see what is happening.

Some symptoms may indicate a serious complication rather than routine skin irritation. Contact NHS 111, ask for an urgent GP appointment or seek urgent medical help if you experience severe abdominal pain, vomiting, signs of dehydration, lots of blood from the stoma or a high temperature.

You should also seek urgent help if your stoma stops producing output for much longer than normal, or if it suddenly becomes very dark, purple or black.

Practical Support With Stoma Care at Home

Skin irritation often becomes worse when small leaks are missed or when a pouch change feels rushed. Families may also feel unsure whether soreness is caused by the appliance, moisture, stoma output or the way the pouch is being removed.

A trained carer can support a calmer routine by helping the person change their pouch at the right time, checking for early signs of leakage and making sure the surrounding skin is fully dry before a new pouch is fitted. They can also record patterns, such as repeated leaks overnight, after meals or during movement, so these can be discussed with a stoma care nurse.

At Secure Healthcare Solutions, our care team often finds that people feel more confident when they have a consistent routine and know when to ask for clinical advice. Our personalised Stoma Care in Wolverhampton helps make daily stoma care feel less stressful while protecting dignity, comfort and independence.

Frequently Asked Questions

What cream is good for irritated skin around a stoma – and can I use Sudocrem?

Avoid ordinary creams including Sudocrem — they prevent the pouch from sticking and can make things worse. The right product depends on the cause. Ask your stoma care nurse before changing anything.

Is red skin around a stoma normal?

Temporary pinkness after removing the pouch may settle quickly. Persistent redness, discolouration, soreness, itching or broken skin is not considered healthy and should be assessed.

How do you treat raw or weeping skin around a stoma?

Raw or weeping skin should be assessed by a stoma care nurse. Avoid applying ordinary creams or dressings without professional advice.

Sources

https://pmc.ncbi.nlm.nih.gov/articles/PMC9819694/
https://www.nhs.uk/tests-and-treatments/colostomy/complications-of-a-colostomy/
https://www.colostomyuk.org/information/stoma-problems/sore-skinleakage/
https://ascnuk.org/

Do you try to avoid tasks or demands expected of you, or do you feel pressure or anxiety because of them? When this happens constantly rather than occasionally, it may relate to a kind of autism spectrum called Pathological Demand Avoidance (PDA). PDA is often misunderstood by clinicians, employers, and support services due to its different profile characteristics from other autism profiles.

In 1980, Professor Elizabeth Newson at the University of Nottingham first described PDA. Recognition of the profile in adults remains inconsistent in the UK, with the challenges adults face in obtaining a diagnosis and the specialist support pathways available.

What is PDA Autism in Adults? Understanding the Profile

Pathological Demand Avoidance (PDA) describes a pattern of autistic experience in which demand avoidance is not occasional but pervasive and present across all settings, throughout the day, and significantly impacts daily life.

We all avoid things that we don’t want to do sometimes. PDA differs because the avoidance is persistent and often outside the person’s control. When a demand or instruction lands on someone with Pathological Demand Avoidance, many individuals with PDA may experience demands as threatening or overwhelming and avoids it as a defensive reaction. Generally, the avoidance is driven by a stress and anxiety response rooted in a nervous system that perceives demands as threatening.

In the UK, PDA is recognised as a type of autism, unlike the DSM-5 and ICD-11 (medical manuals used around the world). The PDA Society, which is the main UK charity focused on PDA, along with more and more research studies, believes that PDA is part of the autism spectrum.

Common Symptoms of PDA in Adults

Adults with PDA develop sophisticated strategies to mask demand avoidance, such as being present as charming, articulate, and engaging in short bursts, making it harder to identify the autism profile.

Pervasive Avoidance of Demand: Avoiding emails, phone calls, work tasks, responsibilities, or even things they want to accomplish.
Sophisticated Avoidance Strategy: A person with PDA will not outright refuse, but will use distractions such as humour, redirecting conversations, and providing elaborate justifications, etc.
Demand Avoidance Extending to Self-Imposed Goals: When a person’s favourite task or things they enjoy doing turn into an obligation that can trigger avoidance in a person with PDA.
Intolerance of Uncertainty: When a person’s intolerance of uncertainty magnifies, such as not knowing what to do if certain tasks or demands are made.
Sensory Processing Differences: Environmental changes, noises, and sudden lights can make demands feel more stressful and make an adult with Pathological Demand Avoidance feel dizzy, nauseated, or have brain fog.
Social Masking and Performance: Appearing as socially confident in short conversations while experiencing intense internal distress, especially women.
Engagement with Roleplay and Fantasy: Roleplay and fiction can help individuals feel safer and less stressed while dealing with real-life problems or demands.
Identity and Control: A strong need for control or independence. Strict rules, demands, or unexpected situations can feel stressful or difficult to manage.

Why PDA is Often Overlooked or Misdiagnosed in Adults

Adults with a PDA profile are experiencing what the PDA Society has described as a mental health crisis, one that is substantially linked to years of misunderstanding, inappropriate support strategies, and systemic barriers.

This is the most significant recent dataset on PDA and the mental health briefing 2023 in the UK:

84% of PDA adults reported experiencing suicidal thoughts
82% of PDA adults have experienced severe anxiety in the previous year
71% reported that a poor understanding of PDA created barriers to support
Only 20 individuals found CBT-style approaches helpful without adaptations

If you or someone you know is experiencing severe emotional distress, support is available through a GP, NHS 111, or mental health services.

Navigating the UK Adult Diagnostic Pathway

The UK Adult Diagnosis Pathway: Getting an autism (and PDA) diagnosis as an adult

See your GP
GP referral
Triage and screening
Assessment appointment
Outcome and diagnostic report

There are three routes to the assessment of Pathological Demand Avoidance:

NHS Local: GP refers you to your local autism assessment service. It is free, but it takes years sometimes for your assessment to be completed.
Right to Choose: NHS-funded but with a private provider of your choice. Start with GP. Takes time, but ICB funding varies.
Private: Pay for a private assessment. No GP referral needed. This is a much faster process, and you don’t have to wait, but all the expenses are borne by you.

Managing Daily Life: Practical Strategies for PDA Adults

Many adults with PDA encounter advice that can feel unrealistic or difficult to apply in everyday life. However, many adults find that generic advice can be difficult to apply consistently in real-life situations. Rather than trying harder, reduce demands and build skills.

Here are some practical strategies for Pathological Demand Avoidance:

Make choices: Task, responsibilities, and demands convert these into choices
Shrink Demands: make a list of tasks that feel overwhelming or obligatory, and break it into small choices or make it optional.
Self-care is not an obligation: do things as you allow yourself, not something you must do.
Adjust work and employment: change work environment (work in a hybrid or remote environment), take flexible deadlines, avoid unnecessary team events, consider self-employment
Manage your PDA burnout: when demands pile up and anxiety rises, the brain’s nervous system crashes, resulting in burnout. Build flexible routines, remove obligation rather than pausing them.

Accessing UK Support: PIP, Access to Work, and Social Care

Accessing PDA support in the UK for people with an autism profile can make their lives more independent, confident, and financially stable.

Apply for Personal Independence Payment (PIP)

PIP (Personal Independence Payment) is for people with conditions such as autism or PDA, who are facing everyday difficulties living.

Apply for a claim at the Department for Work and Pensions (DWP)
Fill the form, which assesses everyday activities, social interaction, and independent travel, etc.
Supporting evidence from healthcare professionals can strengthen the application.

Explore the Access to Work Scheme

Access to Work is a government-funded scheme, which you can apply for from your computer or smartphone online. For autistic adults who are employed or preparing for work, Access to Work provides workplace adjustments, travel support, or job coaching.

Request a Social Care Needs Assessment

Local healthcare services or councils can provide support. First, an assessment will look into your daily challenges to determine the proper care needs to improve your quality of life. Support may include home care, respite services, or community access assistance.

How Specialist Home Care Supports Independence for PDA Adults

With the right understanding, flexible support, and compassionate care, adults with PDA can build routines and environments that feel safer, more manageable, and empowering.

Secure Healthcare Solutions provides personalised autism support for adults in the UK, helping autistic adults live with dignity, understanding and greater independence. Their tailored approach focuses on building trust, encouraging confidence and supporting individuals through daily challenges in a calm, supportive and low-pressure environment.

Relapsing Remitting Multiple Sclerosis (RRMS) is a type of Multiple Sclerosis (MS) that affects a person’s central nervous system. According to the MS Society, over 150,000 people in the UK are living with MS.

RRMS can drastically change a person’s life. Occasional fatigue, dizziness, balance problems, and numbness in body parts, which we think are not of importance, can develop into a long-term neurological condition.

Relapsing Remitting MS is the most common type of MS, which shows its symptoms even in the early stages of the diagnosis. Although there is no cure for MS now, many people with RRMS lead stable, active, and fulfilling lives with the right treatment, care, and support.

What Is Relapsing-Remitting MS (RRMS)?

Relapsing Remitting MS is a type of MS where you have relapses followed by remissions. Around 85% of people diagnosed with MS are initially diagnosed with Relapsing-Remitting MS.

MS is a disorder characterised by demyelination, in which the body’s immune system attacks the central nervous system, causing white matter lesions that underlie the patient’s symptoms.
The most common form is Relapsing Remitting MS (RRMS), where the patient will have new signs emerge or worsening of the older ones. This is called a relapse, flare-up, or exacerbation.

The period between the relapses is a remission(Remitting) period in which the patient makes a partial or complete recovery. The symptoms of RRMS can vary depending on each person and which part of the nervous system is affected.

Relapsing Remitting MS Symptoms to Look Out For

MS symptoms can vary from person to person. Some experience mild or normal complications, while others may have severe complications and even have to visit A&E.

Types of RRMS symptoms you should look out for:

Fatigue

Around 80% of people with MS experience fatigue throughout the course of the disease. It is the most common MS symptom and can be physically draining and intense.

Blurred Vision

Pain behind the eye, double vision, or hazy sight are the earliest signs of RRMS. These symptoms may persist throughout the disease, but in some cases, they may resolve over time.

Numbness and Tingling

When RRMS relapse occurs, numbness in the legs and arms is the most frequent. The whole body feels an unusual sensation or tingling when moving the body. These can increase in the next relapses.

Muscle weakness and Balance issues

Living with Relapsing Remitting Multiple Sclerosis, you can feel off balance or find it hard to walk. Muscle function is also affected; you may feel muscle stiffness, cramps, etc.

Bladder problems

Urgency or late urination, constipation, or bowel difficulties may occur in RRMS. These symptoms can be embarrassing, yet they should not be ignored.

Emotional changes

MS symptoms affect a person’s mind and emotional state. An individual with RRMS shows signs of forgetfulness, trouble following instructions, etc.

A proper diagnosis for Relapsing Remitting MS is necessary to avoid confusing it with other neurological conditions.

Relapsing Remitting MS Diagnosis in the UK

Diagnosing RRMS can sometimes take time because it requires many medical tests, as different symptoms may resemble other neurological conditions. You should consult your GP for further clarification.

In the UK, diagnosis often involves:

Neurological examinations
MRI scans
Lumbar puncture tests
Blood tests to rule out other conditions

Many patients are referred to specialist neurology clinics through the NHS. MS nurses also play a vital role in supporting patients throughout diagnosis and long-term management.

Receiving a diagnosis can bring mixed emotions. Some people feel frightened, while others feel relief at finally understanding the cause of their symptoms.

Understanding How Relapses Occur

RRMS Relapse involves acute inflammation in the central nervous system, where the nerves fail to send signals to the body, creating a dysfunction or relapse.

To be considered a genuine relapse, the MS symptoms should:

Last for at least 24 hours
Occur after a period of stability
Not to be caused by infection, fever, or overheating

Generally, relapse can be managed at home with the help of your GP, MS specialist nurse, or other care professionals. In case of severe relapse, hospital treatment is recommended.

Relapsing Remitting MS Treatment Options

MS has no cure currently, but treatments can help reduce relapses and manage MS symptoms:

Disease-Modifying Therapies (DMTs)
Steroid Treatment During Relapses
Symptom Management

Steroids are only prescribed for severe relapses, for early recovery and inflammation. Medication and Therapies can help manage MS symptoms such as pain, bladder control, anxiety, etc.

DMTs are medications designed to reduce inflammation and lower the frequency of relapses. These treatments are commonly prescribed through specialist MS services within the NHS.

Different medications suit different patients depending on symptom severity, lifestyle, and overall health.

Signs You May Be Having a MS Relapse

MS relapse can happen after a full or partial remission (interval between relapses) of Relapsing Remitting MS, and sometimes you can be uncertain of the MS symptoms that triggered the relapse.

The following are the signs that can trigger a MS Relapse:

Lack of Rest
Infection
Heat and Exhaustion
Emotional Stress
Overheating

Infections such as urination infection, flu, and chest infections also worsen a relapse or trigger a relapse. Stress with prolonged anxiety or a chronic condition can create mental strain. MS Home care services in the UK and lifestyle adjustments can improve the daily life of an RRMS patient.

Daily Living Tips for Managing RRMS

Maintaining your everyday life with Relapsing Remitting MS is achievable with the following tips:

Have a healthy, well-balanced diet
Reduce Alcohol intake and smoking
Be active physically and mentally
Be careful of developing infections affecting swallowing, breathing, and circulation
Emotional support matters

To maintain MS symptoms, many individuals keep daily routines, regular rest periods, or sleep patterns, do mild exercise, prioritising tasks. These small habits build a solid foundation for a healthy lifestyle for RRMS patients.

RRMS Home Care Support from Secure Healthcare Solutions

Living with Relapsing Remitting Multiple Sclerosis can be overwhelming at times with physical, emotional, and lifestyle challenges that affect everyday life. Secure Healthcare Solutions in the UK provide professional carers and a patient-centred approach. We aim to help individuals living with RRMS continue leading safe, dignified, and fulfilling lives within the comfort of their own homes.

At Secure Healthcare Solutions, Wolverhampton, we understand that every individual’s experience with Multiple Sclerosis is unique. Our compassionate Multiple Sclerosis Care in Wolverhampton services are designed to provide personalised support tailored to each patient’s specific needs, whether it involves assistance with daily activities, mobility support, medication management, or emotional wellbeing.