Memorandum submitted by Contact a Family
CONTACT A FAMILY RESPONSE TO THE HEALTH COMMITTEE
INQUIRY INTO CHARGES IN THE NHS
(1) Contact a Family is a charity providing
advice, information and support to families with disabled children
across the UK. Each year we advise over 18,000 families through
our helpline and information services. We draw on the experiences
of these families in submitting our evidence.
(2) Families with disabled children face
additional costs in terms of visiting sick children in hospital
which is not usually possible to get help with. They experience
disproportionate levels of poverty and bureaucracy in their everyday
lives which NHS charges can only exacerbate. They often remain
unaware of their entitlements to help with NHS charges.
That the statutory scheme for helping with the
costs of attending hospital for treatment should be extended to
cover the cost of visiting a sick child.
That consideration is given to abolishing NHS
charges altogether and that the administrative savings are taken
into account when costing such a proposal.
That if charging remains in operation, consideration
is given to funding training for NHS staff and voluntary sector
take up campaigns.
(4) For many years we have been particularly
concerned with the costs faced by parents when visiting children
who are staying in hospital.
(5) Both Contact a Family and another charity,
Action for Sick Children, have long argued that there should be
greater financial assistance for families with the costs of visiting
sick children in hospital. Our two organisations campaigned jointly
in the early 1990s. The issue was once again brought to the forefront
of our minds by the Bristol Royal Infirmary Inquiry Report. One
of the recommendations of Professor Kennedy's report specifically
concerned the need to assist families to meet the costs arising
from travelling and being away from home so that they may be with
their sick child in a tertiary care centre.
(6) The difficulty, in essence, is that
help with the costs of travelling to hospital for treatment are
met through a statutory scheme for low income families. However
the costs of travelling to hospital for visiting are not included
within the scheme. The only way of having these costs met is through
the discretionary Social Fund, which is a cash limited fund restricted
to families on Income Support. Low income families who are working
or on benefits other than Income Support receive no help at all.
(7) There is a statutory scheme to help
people visit family members in prison and it seems unfair that
this is very different to the situation of a sick child in hospital
whose parents may receive no assistance at all with the costs
of visiting their child.
(8) There has been clear recognition by
government that children need to have parents with them when they
are in hospital, including overnight. The Department of Health's
own guidance paper "Welfare of Children and Young People
in Hospital" is explicit on this pointstating that
family support is essential and not a luxury. For some families,
staying overnight is sadly not possible because of the need to
look after other children, or to keep up work commitments. In
these circumstances there is universal agreement that it aids
the recovery of children for parents to visit as often as they
(9) However, the government refused to accept
the recommendations of the Kennedy report. We had suggested that
they might wish to introduce statutory help for all low-income
families to cover the costs of hospital visiting, which would
target help on those on the lowest incomes.
(10) There is already a comprehensive scheme
for help with travel costs to hospital for treatment for low income
groups. The patient applies for a certificate and pays their own
fare in advance, shows the hospital fares office their certificate
of entitlement and receives a refund on the spot. Refunds can
also be claimed up to three months later. The simplest way forward
is that this scheme is extended to pay for travel costs to hospital
for the purposes of visiting a child who is an in-patient.
(11) Additionally, we believe that those
parents whose children are receiving care in a tertiary centre
some way from their homes should receive help towards visiting
costs, regardless of their means. We also believe that car parking
at hospital should be free of charge. Action for Sick Children
recently carried out some research into car parking at hospitals
("Park the car, park the charges" 2004). They found
that of 67 hospital trusts seven offered free parking and 25 offered
concessions. However, the average charge for a 24 hour stay is
£8.50 and in one case it would be £55.20.
(12) One of Contact a Family's medical advisory
panel of senior consultants, who wishes to remain anonymous, said
"its dearer to park at my hospital than it is at the airport".
(13) Although there is a cost to the introduction
of such a scheme, this could at least in part be offset by the
more rapid emotional, psychological and physical recovery of children
who receive the care and attention from their families that they
(14) In 2002 a Conservative Member of Parliament,
Andrew Lansley, tabled an Early Day Motion (no 866) on this matter.
101 MPs signed.
(15) The matter was brought up by Baroness
Pitkeathley in the House of Lords on 25 March 2002 and she was
told that the matter was under consideration.
(16) Parents affected by the cost of visiting
a child in hospital are absolutely furious about it. The following
are representations to us from parents on this issue.
"I am appalled by the fact that anyone should
be charged to park outside a hospital." Parent
"The free car park is quite a walk away
when a child is ill." Parent
"This is an issue that I have always felt
very strongly about. My son Richard was in a hospital out in the
Shropshire countryside 25 miles away with no direct public transport
option and he was regularly in for between six to 12 weeks. I
often lost my benefits and add to this the cost of the petrol,
eating lunch out in the canteen plus childcare for the other kids
when I couldn't get back to pick them up cos Richard was too bad
to leave, plus being expected to do the bulk of the non-medical
caring| I was seriously out of pocket! The memory of it still
makes my blood boil." (Patricia, parent)
"My son spent many months on and off in
hospital having various operations to correct his deformity. My
husband was self employed at the time. We received no financial
help in any way shape or form for anything. My husband's business
went down the pan and we were practically penniless. Assistance
with visiting costs would have taken at least a little pressure
off. I never wish to open the cupboard doors and be faced with
emptiness again." (Lindsay, parent)
"I live in West Wales where there is no
neurology service for children. My daughter has uncontrollable
epilepsy and we travel to GOSH in London frequently. I would like
to see changes that incorporate assistance with costs for families
travelling outside their Health Authority area, the cost of fuel
is an issue in rural areas as is care for other siblings."
"My daughter will be in GOSH for two weeks
and we live in Bristol. On benefits only but not Income Support
as my husband is medically retired. We will want to visit as often
as possible. This is going to be very expensive for us but we
will do it." (Mrs L parent)
"It's a 40 mile round trip each day to visit
my son after his tracheotomy. He'll be in for two months. Only
one of us is allowed to stay over but we have a new baby and my
husband has to work anyway, so neither of us can stay. I'd say
we spend £20 on petrol every other day. The food there is
really expensive too. Because he works, we don't get any help."
(Mrs M, parent)
"You have the full backing of the Down's
Heart Group on this one. It is something we brought up with the
Brompton enquiry and Bristol and we feel very strongly about it.
As the likelihood of cuts in the number of paediatric cardiac
units increases and therefore travelling distances increase we
see this as becoming even more of an issue. I have a family from
Hertfordshire whose son is in hospital in Paddington for the second
time in six months and the current stay is already five weeks,
the majority of which he was in intensive care. There are younger
twin siblings at home so you can imagine how difficult this is."
(Downs Heart Group)
"I am a chair of a support group for families
with HME, an orthopaedic condition that often requires treatment
at a specialist centre. Travelling costs can be very expensive
as the specialist centre may not be local to their homes. One
of our parents says that it is three hours each way from Preston
to Sheffield, £14 plus £4 for a cab to the hospital
because the youngest child cannot manage the walk from the bus
stop to the hospital." (Group leader, HME)
"This is an increasing issue for our families
as care becomes concentrated in just a few centres." (Chief
Executive, Cleft Lip and Palate Association)
(17) Contact a Family was involved in a
review of patient transport carried out by the Social Exclusion
Unit and has been told that hospital visits are to be reviewed
by a Department of Health working party. We understand that this
working party has met, however there was only one representative
selected from the voluntary sector, who was from Age Concern.
Despite our frequent enquiries we were not informed as to any
(18) In summer 2004, Marion Roe (then an
MP), on behalf of the Child Health Group made an enquiry as to
whether hospital visits were still on the agenda of the Department
of Health working party. She was told that the matter was still
"under consideration". We have heard nothing since and
urge the Health Committee to recommend that the Government addresses
this as a matter of the urgency. It is not a complex issue, nor
a new one, it is blatantly unfair, simple to resolve and causes
extreme hardship at a most difficult time. It is overdue for resolution.
(19) As Contact a Family deals mainly with
disabled children, the issue of prescription charges, dental charges
and so forth does not generally arise, as these services are provided
free for children. In general TVs, computers and video games are
provided free of charge in children's hospitals. Most hospitals
will allow children to phone home at no charge, although parents
are asked to use a payphone. This is all part of making hospital
a more pleasant and less frightening experience for children and
we would suggest that adult patients deserve no less.
(20) Parents of disabled children are of
course liable for ordinary NHS charges like any other group. However
there is much evidence that families with disabled children are
more likely to live in poverty (55% of disabled children grow
up in or on the margins of poverty) and experience greater levels
of debt than other families. For this reason, we would welcome
a review of whether NHS charges are really appropriate. Having
charges then automatically involves a complex system of subsidies,
rebates, exemptions which often involve complex means tests. Such
systems also require policing and fraud prevention measures which
are in themselves costly. We would recommend that the Government
looks at the potential administrative savings which may result
in abolishing charges.
(21) Our experience is that families with
disabled children are already subject to extensive claiming processes
for various forms of helpfor example, Disability Living
Allowance, Carers Allowance, Income Support, Council Tax disability
reduction, Council Tax Benefit, Disabled Facilities Grants to
name but a fewas well as all the other assessment processes
for services (such as Special Educational Needs assessments, social
services assessments). For this reason alone, we know that they
would welcome one less set of forms to fill out.
(22) However, it should be noted that even
if all charges were to be abolished, it would still be necessary
to continue a system of refunding fares to hospital, as these
costs are incurred in petrol, train fares or mini cab fares rather
than charged for by the NHS. Indeed as we say above, we would
like to see an extension of this system to cover the costs of
visiting a sick child in hospital.
(23) There are other costs which families
with disabled children incur as a result of receiving inadequate
assistance from the NHS. The most frequent enquiry we receive
from parents concerns the supply of incontinence pads. This is
usually described as totally inadequate, which means that parents
have to supplement supplies using their own resources.
(24) If charges are to remain, it is vital
that parents are informed about their rights to receive financial
support. Contact a Family often hears from parents who have gone
without their rightful entitlements, often for many years.
(25) We do not believe that it is the responsibility
of already hard-pressed NHS staff to learn the ins and outs of
a hugely complex benefit and tax credit system. However, it would
not seem unrealistic for staff to have a basic awareness of specific
help around NHS costs (for example, the low income scheme for
help with dental charges). We also see that it would be entirely
appropriate for staff to gain a reasonable idea of which client
groups may be entitled to additional help (eg pensioners, disabled
people, single parents, low income earners) and purely to sign
post them to the many excellent voluntary organisations which
can advise them in detail.
(26) For example, for health service staff
to suggest to pensioners that it would be worth their while checking
with Help the Aged whether there are any benefits or concessions
that they can benefit from. Contact a Family has recently started
a three year joint project with the Royal College of Paediatrics
and Child Health to ensure that all paediatricians refer families
with disabled children to Contact a Family, so that we can make
sure that they are getting their full entitlements and are in
touch with appropriate support groups. Very often, the voluntary
sector is in an ideal position to provide expert, impartial help
and advice and is already trusted by patients and their families.
We also support initiatives such as basing Citizens Advice Bureau
outreach workers in health settings.
(27) We would recommend that health service
staff are given signposting training and support to make appropriate
referrals. The health benefits to individual patients of increasing
income should be stressed. There is reasonable evidence of greater
reported wellbeing as a result of welfare rights advice such as
reduced stress and fewer visits to GPs.
Contact a Family