Railway journeys Around Britain to Raise Awareness of Antiphospholipid Syndrome

ON 14th OCTOBER, we were joined at our Zoom meeting by Rotarian Phil Godfrey a former railwayman from Solihull who has travelled the country by train to raise awareness of antiphospholipid syndrome, which caused the premature death of his wife.

Phil Godfrey

To date he has raised over £156,000, 62% of his target of £250.000.

Antiphospholipid syndrome (APS), sometimes known as Hughes syndrome, is a disorder of the immune system that increases the risk of blood clots developing in blood vessels.  Antiphospholipid syndrome (APS) an autoimmune condition in which the body's immune system produces abnormal antibodies called antiphospholipid antibodies resulting in an increased tendency for the blood to clot.  The condition can cause strokes, heart attacks, pulmonary emboli and DVTs.  In pregnancy, APS is a leading cause of recurrent miscarriage and stillbirth.

In pregnancy, APS is the most important treatable cause of recurrent miscarriage and a woman is five times more likely to suffer a stillbirth; it is also associated with other complications such as infertility, pre-eclampsia, low-weight babies and premature births.

There is no cure for APS, but the condition can be detected using a blood test, and controlled through use of blood thinners, such as aspirin and warfarin.  APS is one of 182 auto immune syndromes.

There are no statistics as to the occurrence of APS, it is not rare, neither is it common.  It is however under diagnosed.  Phil said that a recent survey showed that 37% of GPs (19,000) were not aware of the syndrome.  Early diagnosis is critical to the treatment of APS.

The first signs of problems for Christine his wife, were a dropped foot, and a lack of coordination in her left hand in which the fingers curled up.  He said, “She was diagnosed to be suffering with multiple sclerosis as the symptom were similar.  It was not until she attended a hospital MS clinic that the consultant questioned the diagnosis as her symptoms were not typical of other MS patients”.  His wife was referred to Professor Hughes, a specialist at St Thomas Hospital, London, who diagnosed APS.

By then however she had lost the use of her limbs one by one until she was paralysed from the neck down.  For an active, young and independent woman, being crippled in this way was unimaginable.  was diagnosed with APS in 2005 and sadly passed away in January 2015.

After her death, Phil decided to challenge himself and at the same time raise awareness and donations to research the syndrome.  He chose to walk from the Isles of Scilly to the Shetland Islands.

He set off in March 2017 but met with fog and horizontal rain that prevented him travelling beyond Land’s End.  He also suffered his first injury in Cornwall, so he returned home and waited until June when he flew to the Isles of Scilly.  His return journey to the mainland was however delayed by a severe storm.

He continued walking and reached Preston when he had to return home due to severe pain in his knee, which required an operation and which resulted in him changing his plans to travel around the coast of Britain by train and so he embarked on The Round Britain Rail Tour with the same objective.

He has now travelled 42,00 miles using 650 trains, 8 ferries and three planes, the smallest a 16‑seater, the largest a 33-seater, and has visited 223 Rotary Clubs.  He started in 2018 and finished a few days before the Covid 19 lockdown in March.  Since then he has spoken virtually to a further 81 clubs.

The money raised is donated to the charity APS Support UK (Charity Registration No. 1138116) to enable doctors to be informed how to recognise the symptoms and to offer support to anyone affected by the condition.

The money raised has been used to develop an e-learning course in conjunction with the Royal Society of GPs for the 52,000 GPs, 600 of which have looked at the course – so some way to go yet.

The next proposal is to develop a similar e-learning course for community midwives.

His Just Giving page may be found at:


Anyone who suspects that they may be affected by APS should contact:

APS Clinic,

London Lupus Centre

1st Floor, St Olaf’s House

27, Tooley Street,

London SE1 2PR

Tel:  0207 234 2155


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Phil Godfrey

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