Select Committee on Health Written Evidence

Memorandum submitted by Contact a Family (CP 2)



  (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.

  (3)  Recommendations

  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 point—stating 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 can.

  (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 need.

  (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." (Sara, parent)

    "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 progress.

  (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 help—for example, Disability Living Allowance, Carers Allowance, Income Support, Council Tax disability reduction, Council Tax Benefit, Disabled Facilities Grants to name but a few—as 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.

Jill Harrison

Contact a Family

November 2005

previous page contents next page

House of Commons home page Parliament home page House of Lords home page search page enquiries index

© Parliamentary copyright 2006
Prepared 18 January 2006