New Personal Independence Payments regulations – planning and following journeys
Muscular Dystrophy UK is concerned that new PIP regulations risk impacting upon access to
the mobility component of Personal Independence Payments.
Current PIP descriptors – Planning and Following Journeys
The descriptors currently read:
a. Can plan and follow the route of a journey unaided. 0 points.
b. Needs prompting to be able to undertake any journey to avoid overwhelming
psychological distress to the claimant. 4 points.
c. Cannot plan the route of a journey. 8 points.
d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or
orientation aid. 10 points.
e. Cannot undertake any journey because it would cause overwhelming psychological
distress to the claimant. 10 points.
f. Cannot follow the route of a familiar journey without another person, an assistance dog or
an orientation aid. 12 points.
New descriptors – Planning and Following Journeys
New PIP descriptors will come into force from 16 March:
a. Can plan and follow the route of a journey unaided. 0 points.
b. Needs prompting to be able to undertake any journey to avoid overwhelming
psychological distress to the claimant. 4 points.
c. For reasons other than psychological distress, cannot plan the route of a journey. 8 points.
d. For reasons other than psychological distress, cannot follow the route of an unfamiliar
journey without another person, assistance dog or orientation aid. 10 points.
e. Cannot undertake any journey because it would cause overwhelming psychological
distress to the claimant. 10 points.
f. For reasons other than psychological distress, cannot follow the route of a familiar journey
without another person, an assistance dog or an orientation aid. 12 points.
Muscular Dystrophy UK is strongly opposed to the decision of the Government to
introduce emergency legislation in light of tribunal judgements which ruled that the
mobility component of PIP should be extended to people who experience
overwhelming psychological distress when traveling alone.
Whilst having a disability does not make a mental health condition inevitable, we do know
that many of the individuals Muscular Dystrophy UK support can experience some form of
mental health conditions during their lifetime – as a direct result of their condition. For
example, adults living with muscle-wasting conditions themselves tell us of the anxiety which
affects their lives.
The case studies below are designed to illustrate the link between having a long term
condition and suffering from anxiety – and highlight the risk that some disabled people could
lose out as a result of the Government’s emergency legislation.
Joanna
Joanna was diagnosed with distal hereditary motor neuropathy. Fatigue and muscle pain are
a very common feature of Joanna’s condition and so although Joanna is able to stand and
then mobilise short distances, she cannot mobilise over 20 metres without extreme difficulty
and significant discomfort.
Joanna suffers from anxiety when planning journeys in public spaces and on public
transport. She is unable to plan a journey by herself, without support from another person for
reassurance and to safeguard her both physically and emotionally. She is often unable to
leave the house at all due to severe anxiety and requires her husband to accompany her on
any journeys.
Willow
Willow was diagnosed with Myotonic Dystrophy, which impacts her ability to travel outside of
her home. Her condition leaves her unable to walk even short distances without an aid and
she is unable to walk more than fifteen metres safely (without falls). Due to the weakness
and wasting in her limbs, Willow would be unable to get up from the ground after a fall. Due
to this fear of falling Willow has developed severe anxiety about leaving the house alone,
particularly when going to new places. The anxiety also leads to difficulty in communicating
and she is entirely unable to complete this because of the overwhelming psychological
distress it causes.
Jackie
Jackie has GNE Myopathy and can only mobilise up to ten to fifteen steps (the distance from
her door to her car) with the aid of her leg braces and only very slowly. When going to
unfamiliar locations Jackie gets extremely anxious as she almost entirely unable to manage
stairs or sloped surfaces and does not know if they will be where she goes. The majority of
the time, she is unable to navigate these obstacles even with the support of her leg braces
and/or the support of another person. Because of this anxiety she cannot go to an unfamiliar
place without another person and would be virtually housebound without her car
Angela
Angela has Charcot Marie Tooth disease, which primarily affects her mobility. She was
previously in receipt of the highest rate of Disability Living Allowance, however once she was
invited to be reassessed under Personal Independence Payments she was refused any
points for mobility and lost access to a Motability vehicle, which she relied on to travel
outside her home.
Angela finds it impossible to plan a journey to an unfamiliar place without others
accompanying her. Although she can mobilise short distances with her stick, she is prone to
falls and would be unable to get up from the ground. Angela would get extremely anxious if
she left the house on her own and is prone to panic attacks which make it essential for
someone she knows to be with her. She is particularly anxious about her physical ability to
manage public transport, uneven surfaces and also about managing her own toilet needs
(she has a weak bladder and requires access at all times to accessible facilities).
Satish
Satish has SMA Type 3. His condition greatly impacts his mobility and he is unable to follow
a journey without assistance. Although Satish can mobilise very small distances inside his
home with the aid of a frame, he is a fulltime wheelchair user outdoors and would be unable
to leave his house without this.
However, Satish is unable to push his own wheelchair or manage slopes and gradients,
which has resulted in great levels of anxiety and prevents him from venturing out alone.
For more information, please contact Shivani Handa on 020 7803 4808 or email
[email protected] or contact Peter Sutton on 020 7803 4838 or email
[email protected]