Articles in Category: Children - Specific Health Conditions

Autism and Asperger Syndrome

on Tuesday, 25 June 2013. Posted in Children - Specific Health Conditions

What is Autism?

Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and adults with autism have difficulties with everyday social interaction. Their ability to develop friendships is generally limited as is their capacity to understand other people’s emotional expression.

People with autism are not physically disabled in the same way that a person with cerebral palsy may be; they do not require wheelchairs and they ‘look’ just like anybody without the disability. Due to this invisible nature it can be much harder to create awareness and understanding of the condition.

Because an autistic child looks ‘normal’ others may assume they are naughty or the parents are
not controlling the child. Strangers frequently comment on this ‘failing’.

People with autism can often have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world.

What are the characteristics of autism?

People with autism generally experience three main areas of difficulty; these are known as the
triad of impairments.

  • Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people)
  • Social communication (difficulty with verbal and non-verbal communication, for example not fully understanding the meaning of common gestures, facial expressions or tone of voice)
  • Imagination (difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).

In addition to this triad, repetitive behaviour patterns and resistance to change in routine are often characteristic.

What is Asperger Syndrome?

Asperger syndrome is a form of autism, a condition that affects the way a person communicates and relates to others. A number of traits of autism are common to Asperger syndrome including difficulty in social relationships, difficulty in communicating, limitations in imagination and  creative play.

Asperger syndrome is usually used for those who are more able, who have better language development and who try to make social contacts but in naive and inappropriate ways. People with Asperger syndrome do not usually have the accompanying learning disabilities associated with autism; in fact, people with Asperger syndrome are often of average or above average intelligence.

Because of this many children with Asperger syndrome enter mainstream school and, with the right support and encouragement, can make good progress and go on to further education and employment.

ASD Info Wales

This is the national site for Autistic Spectrum Disorders (ASD). Here you will find information about Autistic Spectrum Disorders (including Autism and Asperger Syndrome), service details, training opportunities and updates on the implementation of the ASD Strategic action Plan for Wales.

You will also find downloadable resources that can be shared with individuals with ASD, their family and carers.

This site is aimed at those working with children and adults with ASD.

Access the website at www.asdinfowales.co.uk 

Wales Government Strategies on Autism- updated December 2016

The Welsh Government has consulted with parents families and people with autism and related conditions to develop a strategic action plan and delivery plan that aims to ensure people are better supported.

The Plan outlines actions to:

  • introduce a 26-week waiting time target from referral to first appointment for children with autism
  • transform the education support for children with ASD
  • implement a national assessment pathway for children
  • improve employment opportunities for people with autism
  • support organisations to become Autism-friendly
  • raise awareness of information and resources.

For more details visit the Welsh Government website here.

Cardiff and the Vale councils have pooled resources to fund a resource for adults with ASD. It is based in Penarth and can offer a range of support services.The Vale of Glamorgan website has more information on services available for adults on the spectrwm herehttp://www.valeofglamorgan.gov.uk/en/living/social_care/adult_services/autism_in_the_vale/adult_autism_advice/Autism-in-the-Vale.aspx In addition to these resources you will find information on our main website here

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Who handles complaints?

Complaints about the Health Service

Complaints about the Health Service

Abertawe Bro Morgannwg University Local Health Board and each of its Trusts and GP Practices have a procedure for dealing with complaints. New Regulations aimed at streamlining the handling of concerns about the Welsh NHS come into force on 1 April
2011. Under the new Putting Things Right arrangements, the NHS in Wales will aim to
“investigate once, investigate well”, ensuring that concerns are dealt with in the right way, the first time round.

Anyone who has a complaint about NHS services is asked to contact the Complaints Officer at the Practice or Trust and that person will be happy to investigate the circumstances
of the complaint and try to resolve it fairly and amicably with you. This is known as Local
Resolution.

If you remain dissatisfied after this, then you can ask the Complaints Officer to refer your
complaint for an Independent Review (Stage II). This will be carefully considered by a Convenor, although there is no automatic right to have such a Review.

More details are available in the booklet “Complaints…Listening…Acting…Improving”
which you can obtain from the Practice/Trust.

If your grievance continues beyond this stage, then you can ask the Public Services
Ombudsman to investigate.

His address is:

Public Services Ombudsman For Wales
1 Ffordd yr Hen Gae
Pencoed CF35 5LJ
Tel: 01656 641 150 0845 601 0987
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: www.ombudsman-wales.org.uk

If you prefer, you can ask the Local Health Board to do so.
If you need help with conveying your concern, contact the ABM University Health Board or the Abertawe Bro Morgannwg University Health Board Community Health Council (CHC). Your local CHC provides a free and independent advocacy service, which is able to help patients or the people acting for them to raise a concern.

The CHC will offer advice and support, including putting you in touch with specialist advocacy services if you need them.

ABM Community Health Council
Water Street Business Centre
Water Street
Aberavon
Port Talbot SA12 6LF
Tel: 01639 892271

Board of Welsh Community Health Councils
Tel: 029 2023 5558
Web: www.communityhealthcouncils.org.uk

You can contact the concerns team at Abertawe Bro Morgannwg University Health Board

Tel: 01639 683363/683316
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.


Cardiff and Vale of Glamorgan Community Health Council
Cathy Moss, Advocate
Cardiff and Vale of Glamorgan Advocacy Team
Third Floor Park House
Greyfriars Road
Cardiff CF10 3AF
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: www.wales.nhs.uk

Writing a letter to:
Abertawe Bro Morgannwg University Health Board
Mr Paul Roberts, Chief Executive
1 Talbot Gateway
Baglan Energy Park
Port Talbot SA12 7BR

More information on what to do if you are concerned over the quality of healthcare your relative is offered can be found here.

Complaints about Voluntary Organisations

Complaints about Voluntary Organisations

Most complaints regarding a charity should be addressed to the trustees and dealt with
by them under the charity’s own internal complaints procedures. However, there are
a limited number of circumstances where a complaint would fall under the Charities Commission’s jurisdiction, and when it does, they will only take it forward where they are provided with evidence that there is a serious risk to the charity, its beneficiaries or assets. If, someone believes that their complaint is one that falls within their criteria, they should complete the online form (not contact a particular individual within the Commission).

An organisation is a charity in law if it has wholly charitable objects and operates for the public benefit. The Commission registers charities with an annual income over £5000. The Commission does not therefore confer charitable status (an organisation either is a charity or isn’t) and so cannot take it away. If an organisation is a charity, it remains a charity forever and it is the trustees’ responsibility to run it accordingly and in line with charity law.

For further information contact:

Charity Commission
Wales Office
8th Floor Clarence House
Clarence Place
Newport NP19 7AA
Tel: 01663 225505
Contact centre: 0870 333 0123
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: www.charity-commission.gov.uk

Consumer Focus Wales

Consumer Focus Wales

Consumer Focus is the new statutory organisation campaigning for a fair deal for consumers in England, Wales, Scotland, and, for postal services, Northern Ireland.

Consumer Focus was created through the merger of three consumer organisations; energywatch, Postwatch and the National Consumer Council (including the Welsh and Scottish Consumer Councils). The new approach allows for more joined-up consumer advocacy, with a single organisation speaking with a powerful voice and able to more readily bring cross-sector expertise to issues of concern.

Consumer Focus has strong new legislative powers. These include the right to investigate
any consumer complaint if they are of wider interest, the right to open up information from
providers, the power to conduct research and the ability to make an official super-complaint about failing services. Consumer Focus is resourced to use these powers and campaign on the issues that matter most to consumers.

For further information contact:

Consumer Focus Wales
Portcullis House
21 Cowbridge Road East
Cardiff CF11 9SR
Tel: 029 2078 7100
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: www.consumerfocus.org.uk

Hospital admissions- making sure staff know your child and how to complain!

Hospital admissions- making sure staff know your child and how to complain!

Too many people with a learning disability enjoy second rate healthcare and services- in the past many have been let down by the system and the 1000 lives project was established to help avoid any more unnecessary suffering. Health professionals and families have developed better ways of working that all agencies are now expected to adhere to. These aim to ensure that staff and others have a better understanding of an individuals' needs. likes and dislikes and are better equipped to support their recovery.

The Welsh Government have supported NHS trusts across Wales to develop the 1000 Lives  guide that aims to  improve general hospital care of patients who have a learning disability

Amongst the many practical tips within the guidance is the 'Traffic Light' approach. This is a snapshot of simple information that gives a clear picture of what is important to a person. Apart from essential information on health issues and medication the documentation allows you to inform any care provider things that are unique and important to your relative, this can include routines, things that cause distress or anxiety and the best ways to communicate and care for an individual.

  • Things you should know
  • Things You Must Know
  • Things that matter to me

Raising a concern about Health Services

Putting Things Right

The NHS in Wales aims to provide the very best care and treatment and it is important that we welcome comments and learn from people’s experiences, good or bad. The vast majority of people are happy with the service they receive.
 
Sometimes though, things might not go as well as expected. When that happens, we need to look at what went wrong so we can try to make it better. 
This information applies to you if:
  • You are not happy with care or treatment provided by or for the NHS in Wales
  • Or If you have any other concerns you think we should know about.

It tells you about the arrangements that will be in place from 1 April 2011 for looking into concerns.

 

What is a concern?

A concern is when you feel unhappy about any service provided by the NHS. By telling us about your concern, we can apologise to you, investigate and try to put things right. We will also learn lessons and improve services where they need to be better.

There are some things that we cannot deal with under the arrangements, such as:

  • Private healthcare or treatment (including private dental treatment)
  • A complaint which was made and investigated under the arrangements that were in place before 1 April 2011.

  

Who should I talk to about my concern?

If you feel able to do so, the best place to start is by talking to the staff who were involved with your care and treatment. They can try to sort out your concern immediately. If this doesn’t help or if you do not want to speak to staff who provided the service, then you can contact a member of the concerns team. 

For concerns about health services, you will need to contact your Local Health Board or the relevant NHS Trust.

If you have a concern about services that you have received from your General Practitioner (GP), Dentist, Pharmacist or Optician you should normally ask the practice to look into it for you, but if you prefer, you can ask your Local Health Board to do so.

You can contact the concerns team by:

  • Phoning
  • Emailing
  • Writing a letter
  • Faxing
  • Texting

If you need help to tell us about your concern, please let us know, or contact your local Community Health Council (CHC). Your local CHC provides a free and independent advocacy service, which is able to help patients or the people acting for them to raise a concern. The CHC will offer advice and support, including putting you in touch 
with specialist advocacy services if you need them. Your local CHC can be found below:

  

Who can raise a concern?

If this is something that has happened to you, you can raise the concern yourself. If you prefer, a carer, friend, relative or your local CHC can represent you, but you will be asked to agree to this.

How soon should I tell someone about my concern?

It is best to talk to someone about your concern as soon as possible after the problem happened but you can take up to 12 months to let us know. If a longer time has passed but there are good reasons for the delay, tell us anyway, as we may still be able to deal with your concern.

  

What happens next?

We will:

  • Let you know that we have received your concern within 2 working days (weekends and bank holidays not included);
  • At the same time, ask you if you have any particular needs that we should be aware of in dealing with your concern
  • Also ask you how much you want to be involved and get your consent to accessing your health records, if this is needed
  • Investigate your concern
  • As part of the investigation, decide with you whether we need to get specialist advice (such as a clinical opinion) or other independent help with sorting out your concern
  • Let you know what we have found and what we are going to do about it
  • In most cases, let you have a final reply within 30 working days of the date when we first received your concern (weekends and bank holidays not included). If we can’t reply to you in that time, we will give you the reasons why and let you know when you can expect a reply.

Some cases might need further investigation under the Redress arrangements. Redress is a range of actions that can be taken to resolve a concern where the organisation might have been at fault in causing some harm. It can include a written apology and explanation of what happened, an offer of treatment/rehabilitation to help relieve the problem and/or financial compensation. If Redress may apply to your concern, we will let you know what this means in more detail.

  

What you should do if you are still unhappy

If your concern has been looked at by us and you are still not happy with our response, you can contact the Public Services Ombudsman for Wales.

  • Public Services Ombudsman for Wales
  • This email address is being protected from spambots. You need JavaScript enabled to view it.

Parliamentary and Health Service Ombudsman

Parliamentary and Health Service Ombudsman

The Parliamentary and Health Service Ombudsman considers complaints from the
public against government departments, a range of public bodies in the UK, and the NHS in England, that have not acted properly or fairly, or have provided a poor service.

The Ombudsman regularly looks at complaints about benefits (Department of Work and
Pensions) and hospital treatment (NHS).

The Ombudsman usually only take on a complaint after the organisation, practice or trust involved has had a chance to respond so that they have an opportunity to put things right. However, if you are still unhappy you can bring your complaint to the Ombudsman. If the
complaint concerns a government organisation, it will need to be referred to the Ombudsman by an MP.

To find out who your local MP is,

visit www.findyourmp.parliament.uk
or contact the
House of Commons Information office on 020 7219 4272.

Complaints about the NHS do not have to be referred by an MP.

You can find a copy of the complaint form on the Ombudsman’s website, or you can request one via their enquiry line. The details for these are listed below.

When a complaint is received, a written acknowledgement of this will be sent within two working days. A reference number will also be issued which should be quoted in all future contact. The Ombudsman will keep you regularly informed of the progress they are making in considering your complaint.

For further information contact:

Parliamentary and Health Service Ombudsman
Millbank Tower
Millbank
London SW1P 4QP.
Tel: 0345 015 4033
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: www.ombudsman.org.uk

Public Service Ombudsman for Wales

Public Service Ombudsman for Wales

If you are still dissatisfied you can contact the Public Service Ombudsman for Wales:

The Public Services Ombudsman for Wales
1 Ffordd Yr Hen Gae
Pencoed CF35 5LJ
Tel: 01656 641199
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: www.ombudsman-wales.org.uk

 

Help with Complaints in your Area

Who deals with complaints in your local authority

  

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