A Young Action Online document.  You are welcome to redistribute or reprint this document without seeking our permission provided: 1) you do not abbreviate or change the text in any way; 2) the authorship information is retained; and 3) www.youngactiononline.com is credited as the source.

Social Services and Children with ME
Misunderstandings
Child Protection Procedures
Ways Out of the Nightmare

by Jane Colby
Executive Director of Tymes Trust

With sections by:
Max Daly (of the Big Issue);
Natalie Powers (Young Person with ME);
Dr Nigel Speight (Consultant Paediatrician);
Paul Franklin (Former Social Worker)

The late 1990s saw a distressing new trend in the treatment of children with ME caused by misunderstandings about the nature of the disease. Parents of children with ME are regularly being suspected of not looking after their children properly, or even of harming them on purpose.

Often what sparks off the chain of events is that the children are too ill to go to school and the officials cannot understand why, believing that ME is not really a serious condition, and that the children could be in school if their parents would only let them go.

Another trigger can be if parents do not wish their children to undergo the fashionable "graded exercise" treatment for their ME. In one case, for example, a teenage daughter had already been made very ill by the treatment, and so the family naturally refused it for their son. (For more information on graded exercise, see the Young Action Online document Graded Exercise - does it really work?

What happens next is that a professional, often a community paediatrician, calls in Social Services to investigate the whole family. Social Services personnel are now primed to suspect the family of being neglectful or abusive towards the child, and this may colour the impressions they get, especially when they may not have up-to-date information about ME.

In August 1998, a landmark article appeared in The Big Issue, reporting on the increasing use of child protection proceedings to place children with ME in psychiatric units against their will and that of their parents. Families of children with ME to whom this happened did not know that their experience was being shared by many others throughout the country until, starting with The Big Issue (who kindly allowed us to reprint their article) I was able to convince the media that this unfortunate new trend was becoming widespread.

At Christmas 1998 the situation came to a head, with one family's case being heard in the High Court, and another family facing Christmas without their child.

"Inhuman Scheme Forces Children into Psychiatric Units"
Exclusive by Max Daly, working with Jane Colby

Here are some of the comments made in The Big Issue:

Distraught families are calling for a change to an "inhuman" child protection system which could lead to hundreds of children diagnosed with ME being forced into psychiatric units against their parents' will....

The medical world is divided between those who believe the condition is a mental disorder and those who accept it as physical. Each side has its preferred treatments, although none have been proved to work....

Families say they are often blamed for their child's inability to recover because ME is misunderstood.

If they are seen as harming their own children by keeping them at home, local authorities can evoke the same powers used to remove children from violent or sexually abusive families....

Dr Alan Franklin, a retired consultant paediatrician, said: "This treatment of families is inhuman and is based on doctors misunderstanding the disease."

Upwardly Mobile - A Positive Experience of Social Services
By Natalie Powers

When doctors, teachers and social workers do understand ME the picture can be very positive. Natalie Powers has been very kindly treated since the physical nature of her illness was accepted. Here is her own article from the Christmas 1998 edition of Tymes Magazine:

I had a lot of very severe symptoms with my ME and my consultant, Dr Dowsett, advised us to contact social services to get some mobility aids. Not only to help me, and make my life more bearable, but also to conserve my energy for doing other things. We were worried about involving social services as we had heard a lot of horror stories about how some families had been treated.

However, we did contact them, and Hilary Stott came round to assess my needs. My parents explained my illness and our problems. Hilary didn't know a lot about ME, but listened to my parents. She asked me about my problems and what help I needed.

I had three main problems. Needing help with the stairs was one. If I managed to get down I had to stay downstairs until night. Then my parents had to lift me step by step up the stairs. Not only did this hurt me, but them as well. Secondly, the doors had high thresholds and my wheelchair had to be lifted in and out so I couldn't go outside on my own. Last was the bathroom. Once my mum had helped me into the bath, I couldn't get out again. I was too big for mum to lift out, so she had to drag me out, which not only hurt but made me feel guilty, useless and embarrassed.

Mrs Stott asked for permission to write to Dr Dowsett for her views on having a stair lift fitted. Dr Dowsett replied very quickly, and in six weeks social services had arranged for the Council to fit a stair lift. It has made a great difference; I can go down or upstairs as I wish; I'm not confined to one part of the house; I feel part of my family again but with freedom to go to bed to rest when I want and some independence.

Social services also got doors without thresholds fitted. This means I can go out in the garden in my wheelchair on my own, which gives me a little freedom. They gave me bath stools and had rails fitted along the bath - I still need help getting in and out but it doesn't hurt so much and I have a bit of dignity left.

I have found the social services very helpful. I would like to say a big thank you to Mrs Stott, Stevenage Borough Council and Dr Dowsett.

To anyone who needs this kind of help I would say - go for it!

As you can see, this is a very different picture from the nightmare of parents being blamed for stopping their child getting better. Natalie has been allowed to choose to be looked after at home, under the care of her GP and her own consultant, which is what the Royal Colleges of medicine recommended for ME in their 1996 report.

Unfortunately, the children's section of that report made some statements which have since been accepted by the authors of the report as being too inflexible - indeed, one of the psychiatrists who wrote the report has written to a child apologising for sounding so inflexible. In the meantime of course, the report is widely referred to, and some of the problems which families are facing - such as the suspicion that parents are hindering their children's recovery - have followed from statements in it.

The Tymes Trust's Professionals Referral Facility can put your doctors, teachers and social workers in direct touch with members of their own profession who understand ME. This can help alleviate the misunderstandings that might otherwise occur.

Child Protection

Of course, where Social Services suspect that a child may be being neglected or abused, they have a duty to investigate the family. This comes under Section 47 of the Children Act 1989, which describes the Local Authority's Duty to Investigate as follows:

The Act goes on to give more details.

Protecting Children with ME
By Dr Nigel Speight, Consultant Paediatrician

Dr Nigel Speight gives his analysis of the situation, together with advice from his standpoint as a Consultant Paediatrician:

Sufferers of ME often meet with disbelief and rejection from their doctors, when what they need is support and sympathy. However, in the case of children and young people with ME, there are much worse ways in which they can be treated by professionals, and some families end up wishing that the doctors had rejected them and left it at that!

Over 10 years ago there was the terrible case of a boy from the Isle of Man who was subjected to a court order and admitted to hospital against his will. The court order was eventually reversed and everyone heaved a sigh of relief and assumed nothing of the sort would ever be tried again.

Unfortunately, this is not the case. Over the last two years there have been a small number of cases in which a similar approach has been threatened and one case in which a 15-year-old boy was actually detained on a child psychiatry unit for seven months, against his will and that of his parents.

Misguided approach

Why are some professionals behaving in this way and how should families behave when faced with these threats? I believe that the main factors behind these cases are:

• The Royal Colleges Report (1996) - the section on children was particularly unfortunate, recommending immediate return to school and discouraging home tuition. It would appear to have been written by a psychiatrist who sees ME as little more than a variant of school phobia.
• Doctors who do not believe in ME in the first place.
• The drive within the educational system to enforce school attendance.
• A belief in the efficacy of graded exercise and cognitive therapy.

Suffice it to say that the evidence for the efficacy of these approaches is extremely weak and they are certainly not curative. This leads to an initially well meaning but, I believe, misguided approach characterised by therapeutic enthusiasm, as in: "We have ways and means of making you get better."

This view was summed up in a lecture by a prominent child psychiatrist to a national meeting of Britain's paediatricians last year in which the speaker concluded: "This [ME/CFS] is a treatable condition and parents who stand in our way should be treated with court orders."

This school of child psychiatry is probably unconsciously applying the model of anorexia nervosa to ME/CFS. They are used to getting court orders to enforce life-saving tube-feeding against the anorexic child/adolescent's will. This can be justified in terms of medical ethics in that the patient genuinely, but mistakenly, believes he/she is overweight, and therefore is not competent to withhold informed consent.

In the case of ME/CFS, the situation is very different. It is rarely life-threatening, and the efficacy of the treatment prescribed is extremely questionable, therefore parents and young ME patients are perfectly entitled to withhold consent, and in my opinion it is basically unethical for doctors to attempt to enforce it by court orders.

Typical sequence of events

Usually the child is too unwell to attend school. In addition, he/she is usually either not under a paediatrician at all or under a paediatrician who does not really believe in ME and feels it is his/her duty to refer the young person to a child psychiatry unit.

The parents and young person usually stoutly decline to see the child psychiatrist on common-sense grounds, or they see the child psychiatrist and are unimpressed by the arguments for admission to the psychiatry unit. The paediatrician (often a community paediatrician) then feels (misguidedly) that it is his/her duty to activate child protection procedures on the grounds that the parents are not acting in the child's best interests by not taking medical advice. This is naturally very threatening for the family.

The social services department therefore have a duty to investigate and arrange a case conference. At this conference the family may be threatened that if they do not agree to psychiatric admission, the child's name will be placed on the "at risk" register with a view to possible court proceedings. This is a nightmare scenario.

What can we do?

It is difficult to give one package of advice to meet all circumstances as a lot depends on the beliefs of each of the agencies involved. In general, the following approach suits most cases:

Do not panic. Keep faith in your own sanity. Remind yourself that doctors are not omniscient and all powerful, and that your lot are just misguided. Get a second opinion from a paediatrician who believes in ME as a physical illness. It is vital you choose the right person. Ask the ME organisations for advice. Your GP should agree to getting you the second opinion of your choice, under the Patient's Charter. Do not be fobbed off by financial arguments. Threaten to write to your MP and carry out the threat if it does not get results instantly. As a last resort, change your GP. Play for time There is a lot of inertia in the system. Politely decline appointments to see psychiatrists and social workers until after you have got your second opinion. Quite often, social services will go into retreat mode if your second paediatric opinion is positive. If social services keep threatening court action, then: Go on the offensive. Write to your MP if you have not already done so. Involve the media; it is a good story for local radio and newspapers. Ask for help from the ME charities. Get in telephone contact with the other families around the country who have been through the same ordeal. Get a good lawyer. Your average local solicitor usually does not have the necessary specialist knowledge. You need a real fighter with much expertise in child care. Get advice from the ME charities again. Your lawyer can advise how to resist. Judicial review, One measure which worked well in a recent case was to request a judicial review of the actions of the doctors and social services department. This freezes everything and if the eventual judgement is in your favour, you have won by a knock-out. However, nothing is foolproof and there is always a danger that the judge will call in the "wrong" expert! Even if you do not go down the judicial review route, there are plenty of lines of defence through the child protection system.

I know of four other cases where the social services have retreated or been forced to retreat at an early stage. So even though the threat still remains in some parts of the country, I am optimistic that we are beginning to win the arguments in most cases and protect children from emotional and physical abuse by professionals.

(first published in InterAction No 29 March 1999)

Other Hints and Tips

It is important for the school to understand why your child cannot access education in the usual way, as this can circumvent misunderstandings that lead to referrals to social services.

As a former headteacher, Consultant for the Education of Children with ME and a member of the National Association of Educational Inspectors, Advisers and Consultants, I have spent many years developing and writing about special principles for education which can give a child with ME academic success without exacerbating their illness.

A reprint of an article which is particularly relevant to this issue and which I provided for Special Children Magazine is contained in Tymes Magazine Issue 36. To avoid misunderstandings with the school, Tymes Trust strongly recommends that parents give a copy to the school along with 'ME in Children and Young People' produced by the Trust with Dr Alan Franklin. An education pack and a GPs pack from the Trust will back you up, as will the use of the Professionals Referral Facility referred to above.

If school attendance is impossible, or if it is resulting in further illness and lack of academic results, consider other types of education out of school as soon as possible, and suggest them to your Local Education Authority, with a back-up letter from your GP or consultant. This can stop the education professionals from getting the impression that a family is hiding a child away from the world.

If possible, try to avoid the situation becoming confrontational in the first place. Be reasonable and polite, but firm. And take legal advice sooner rather than later. Once child protection procedures start, they can be rather like a juggernaut and difficult to stop.

Contact Tymes Trust on 01245 401080 or by writing to: PO Box 4347, Stock, Ingatestone CM4 9TE.

Complaint about your doctor?

The General Medical Council (GMC) has set up clear standards of competence, care and conduct for doctors, including that they "make sure their personal beliefs do not prejudice their patients' care" and "listen to patients and respect their views" respecting the rights of patients to be "fully involved in decisions about their care".

The GMC issues a booklet which outlines what to do if you want the GMC to investigate a problem with your doctor. Legal action can be taken if it finds "serious professional misconduct".

To find out more or to order the free booklet "A Problem with your Doctor?" call the GMC on 0171 915 3603 (Action for ME also has copies).

You can also get general advice about the NHS complaints system from your Community Health Council or by calling the Health Information Service on 0800 665544.

(first published in InterAction No 29 March 1999)

Help From Social Services
By Paul Franklin, Former Social Worker

Introduction

Social Service departments appear to be hard pressed to provide the services that are required of them. Often there is considerable delay with disappointing results. However all departments should have a Long Term Care Charter and should have a Complaints procedure. If you use these you may evoke a better response.

Legislation relating to children with disabilities is contained in several acts of parliament.

Children Act 1989

The Children Act 1989 aimed to establish a new unified approach to local authority services. Duties are placed on local authorities toward 'children in need' which includes children with disabilities. Children and young people up to the age of 18 are included in the Act.

Although the Act has been in force for some time, services are still patchy. The type of services available for disabled children and young people and their families varies according to the policy of each local authority, so you will need to ask at your local social services office to see what help is available in your area.

The range of services which may be provided by social services under the Children Act includes:

• Assessment of need and care plan
• Social work and counselling
• Short term(respite) care and longer term provision(such as the residential element of a special school placement)
• Services from occupational therapist, technical officer, specialist social worker, care assistant
• Equipment and adaptations
• Interpreters, translating and a range of services for families and children from ethnic minority groups
• Advocacy and representation for children and parents
• Social security benefits advice and assistance
• Information about services
• Financial help

Equipment and Adaptations

Assessments by Occupational Therapists are undertaken to look at ways of improving the quality of life of a disabled person by exploring their physical environment.

OTs will look at how a disability affects someone and decide on the 'aids for daily living' that they require.

There are a whole range of things that can help from large things like stairlifts, downstairs toilet/shower to much smaller ones.

There are catalogues full of smaller items that can make life a little bit easier, - knives and forks that are easier to hold, chairs that are easier to get out of etc.

Most local authorities supply certain aids free of charge - such as bath seats /rails to make bathing and showering safer.

They can look at ramps and widening doorways to improve access and if appropriate they may explore the option of specially adapted accommodation.

Home Care / Respite Care

All local authorities have home care and respite care schemes, however they are almost always means tested.

Register of Children with Disabilities

Under the Children Act social service departments have to set up a register of children with disabilities to help them plan future services. Registration is not compulsory and children and young people who are not registered are equally entitled to services. The register is completely separate from any other record or register held by social services.

Chronically Sick and Disabled Persons Act (1970)

The Chronically Sick and Disabled Persons Act imposes various duties upon local authorities towards disabled people of all ages, including disabled children as defined in Section 17(11) of the Children Act (*)

The relevant sections are:

Section 1

As amended by Section 9 of the Disabled Persons Act 1986, this section requires authorities to identify the number of disabled people in their area, to publish information about social services under Section 2, and to ensure that anyone using a social service is told about any other relevant services available.

In December 1999 the Government launched its National Charter for Long Term Care "Better Care, Higher Standards". Every Local Authority should have a Long Term Care Charter outlining its services.

Section 2

This section requires authorities to make arrangements for the provision of a number of services, if they are satisfied that it is necessary for them to do so in order to meet the disabled persons needs. The services are:

• Practical assistance in the home
• Provision. Or assistance in obtaining radio, television, library or similar recreational facilities
• Lectures, games, outings or other recreational facilities outside the home or assistance in taking advantage of educational facilities available
• Facilities for, or assistance in, travelling to and from home for various purposes
• Assistance in arranging adaptations to the home, or the provision of additional facilities designed to secure greater safety or convenience
• Facilitating the taking of holidays
• Meals whether at home or elsewhere
• Provision, or assistance in obtaining a telephone and any special equipment to enable the disabled person to use it.

Authorities are responsible for making decisions regarding entitlement to these services. Once need has been established, provision of the service should be made within a reasonable time.

(*) a child is disabled if he is blind, deaf or dumb or suffers from a mental disorder of any kind or is substantially and permanently handicapped by illness, injury or conjenital deformity or such other disability as may be prescribed: and in this Part "development" means physical, intellectual, emotional, social or behavioural development: and "health" means physical or mental health

Disabled Persons (Services, Consultation Representation) Act (1986)

This Act supplements the provisions of the Chronically Sick and Disabled Person's Act 1970 in a number of specific ways, and like the 1970 Act, applies to both disabled children and adults. Some specific sections have not been implemented as they have effectively been superseded by the community care provisions, including the Children Act.

The main sections in force are as follows:

Section 4

Requires authorities to assess need for services under Section 2 of the 1970 Act when requested to do so.

Section 5 and 6

Requires authorities to identify disabled school leavers and assess their needs for social services.

Section 8 (implemented in part)

Requires authorities to take into consideration the abilities of carers to continue to provide regular care when deciding on the need for services.

Section 9

Amends Section 1 of the 1970 Act to require authorities to provide more information.

Section 10

Requires authorities to consult with appropriate organisations of disabled people when making appointments or co-options to any council, committee, or body of people with special knowledge of the needs of disabled people. It is therefore particularly relevant to local authority social services committees.

Carers and Disabled Children Act (2000)

This act came into force in April 2001. It gives carers, including parent carers, greater rights for assessment and services. Local authorities can give support to carers directly following assessment - independently of whether the cared for person chooses to be assessed.

Direct payments can now be paid to parents of disabled children. The extension of direct payments also includes young people of 16 and 17 years. Direct payments offer more choice in the way services can be tailored to meet the need. For example, they may be used for support within mainstream school providing leisure activities or child care.

Local authorities can also offer voucher schemes for short-term breaks for carers.

However no extra money has been made available to implement these changes and the local authority has the power to charge for the services that a carer receives.

Young Action Online    PO Box 4347    Stock    Ingatestone    CM4 9TE