Recognise Thoracic Outlet Syndrome: Improve NHS Information, Diagnosis and Care
To: NHS England, NICE and relevant UK healthcare organisations

Thoracic Outlet Syndrome (TOS) is a condition in which nerves and/or blood vessels passing between the neck and arm become compressed.

Despite its potential to cause significant pain, disability, neurological symptoms, vascular complications and blood clots, TOS remains poorly understood and inconsistently recognised across the NHS.

We are calling for better national recognition, information, clinical education and pathways for people living with TOS.

Why does this matter?
TOS is not one single condition.

It can broadly be divided into:

Neurogenic TOS, involving compression or irritation of the brachial plexus;
Venous TOS, involving compression of the veins supplying the arm; and
Arterial TOS, involving compression of the arteries supplying the arm.
These forms can present differently and can require very different investigations and treatments.

However, current NHS information does not adequately explain these distinctions.

The NHS currently states that TOS can involve nerves or blood vessels and acknowledges that it can cause symptoms including arm swelling, coldness and colour change. It also warns that TOS can cause a blood clot in the arm. However, the information remains relatively limited and does not adequately explain the different forms of TOS or the potential vascular complications.

This is particularly concerning for people with venous TOS and upper-extremity DVT.

DVT does not only happen in the leg
The NHS DVT information currently focuses overwhelmingly on lower-limb DVT.

Although it acknowledges that DVT symptoms can occur in the arm, the subsequent information about diagnosis, recovery and prevention is predominantly written around leg DVT.

This can leave patients with an upper-limb DVT struggling to find relevant information about their condition.

For some patients, an upper-limb DVT may be associated with an underlying anatomical problem such as venous thoracic outlet syndrome.

This means that treating the clot alone may not address the underlying cause.

There are already NHS vascular services that specifically recognise the relationship between upper-limb venous thrombosis and thoracic outlet syndrome, demonstrating that this is a clinically recognised area of medicine.

A gap in national guidance
There is also a significant gap in national guidance.

NICE's guideline on venous thromboembolic diseases (NG158) does not provide recommendations for upper-extremity DVT. During its consultation, NICE explicitly stated that management of upper-extremity DVT was outside the scope of the update and that DVT in the arms was therefore not covered by the guideline.

We believe this gap deserves renewed consideration.

People should not have to navigate a potentially serious vascular condition through a healthcare system where national guidance is predominantly structured around thrombosis in the lower limb.

TOS can be disabling
For people living with TOS, the problem extends beyond blood clots.

Symptoms can include:

• persistent or activity-related pain
• numbness, tingling or weakness
• arm and hand swelling
• heaviness and fatigue
• changes in skin colour
• coldness of the hand
• vascular congestion
• reduced function of the affected arm; and
• significant limitations on work, education, exercise and everyday activities.
• Some people experience symptoms in both arms.

Diagnosis can also be challenging because symptoms may overlap with other neurological, orthopaedic, vascular and musculoskeletal conditions.

Patients can therefore experience prolonged periods of uncertainty, repeated referrals and delayed diagnosis or treatment.

We are calling for change
We call on NHS England, NICE and relevant healthcare organisations to:

1. Improve NHS information about TOS
Update NHS patient information so that it:

clearly distinguishes neurogenic, venous and arterial TOS;
explains the different symptoms and potential complications;
accurately describes vascular TOS;
explains that TOS can be bilateral; and
provides appropriate information about investigation and treatment.

2. Recognise upper-extremity DVT
Ensure NHS information clearly communicates that DVT can occur in the upper limb as well as the lower limb.

Information should explain the potential relationship between upper-extremity DVT and underlying conditions such as venous TOS.

3. Review NICE guidance
NICE should assess whether its existing guidance adequately addresses:

upper-extremity DVT;
thrombosis caused by anatomical compression;
venous thoracic outlet syndrome; and
appropriate investigation and management pathways for these patients.
Where gaps are identified, appropriate guidance should be developed.

4. Improve clinical education
Increase awareness of TOS among healthcare professionals, particularly those working in:

• primary care;
• emergency medicine;
• vascular services;
• neurology;
• orthopaedics;
• radiology;
• physiotherapy;
• pain medicine; and
• relevant surgical specialties.
• Healthcare professionals should be better equipped to recognise when symptoms may represent TOS or vascular complications rather than assuming a more common musculoskeletal or neurological diagnosis.

5. Develop appropriate referral pathways
Patients with suspected TOS, particularly those with vascular symptoms or upper-extremity thrombosis, should have access to appropriate specialist assessment and clearly defined referral pathways.

6. Include patients in the development of guidance
Patients and patient organisations should have a meaningful role in reviewing NHS information, developing educational resources and informing future guidance.

This is about more than one condition.
This petition is not asking for preferential treatment for people with TOS.

It is asking for accurate information, appropriate clinical recognition and equitable access to evidence-based care.

A person with a blood clot in their arm deserves the same clarity about what it means and why it happened as someone with a blood clot in their leg.

A person whose symptoms are caused by compression of a blood vessel or nerve deserves healthcare professionals who understand that possibility.

And people living with TOS deserve information that reflects the complexity of the condition rather than leaving them to piece it together themselves.

Thoracic Outlet Syndrome should not fall through the cracks.

We are asking NHS England, NICE and healthcare organisations across the UK to work with clinicians and patients to improve awareness, information, guidance and care.

Please sign this petition and help us make TOS better recognised across the NHS.

TOS Voices
UK patient organisation for Thoracic Outlet Syndrome