Your views: children with disabilities and long-term conditions

We know that high quality healthcare, integrated effectively with other required services such as education and social care, is vital for children and young people with long-term conditions and /or disabilities. There is activity already been undertaken to address some of the problems that we all know exist, including:

  • relevant outcomes within the NHS and Public Health Outcomes Frameworks
  • the extension of Any Qualified Provider to wheelchair and incontinence services for children and young people
  • the testing of the ambition within the Special Educational Needs and Disability Green Paper by pathfinder areas to develop a single assessment and single health, education and  care plan.

The development of the Children and Young People and Young People’s Health Outcomes Strategy offers a real opportunity to drive further improvements. To help us with this, we want to hear from you on the following questions as they relate to children with long-term conditions and / or disabilities:

  • Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?
  • With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?
  • The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?
    See outcomes specific to children and young people in these frameworks
  • What should key health outcomes for children and young people include?

The Forum’s work on disabilities and long-term conditions is led by Colin Green and Gillian Baird.

In Children and Young People’s Health Outcomes Forum | Tagged ,

28 Responses to Your views: children with disabilities and long-term conditions

  1. Heather Watson says:

    Q) Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?

    A) In my case it would have been more helpful if the Rheumatologist that had diagnosed my daughter with Hypermobility Syndrome actually gave us the full details of how it could affect her in the future then we wouldn’t have had to go to A&E so many times to find out she had done soft tissue damage. this had a knock on affect of our GP reporting us to Social Services under the grounds of Fabricating an Illness as our daughter also has Aspergers Syndrome so doesn’t show the same emotions/pain reactions of that of a normal child. This is still an ongoing case :(

    Q) With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?

    A) Have the different departments actually realise that different parts of the Hypermobility Syndrome are connected and not leave it upto us Parents to have to tell the so-called Professionals ie constipation, wetting, night cramps, muscle tightness, flat feet are all connected to my daughter’s Hypermobility Syndrome.

    Q) The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?

    A) If physios concentrated on the bigger picture of a child instead of treating the current symptoms then the treatment of children likel my daughter would be so much better. Her OT has been brilliant in realising that if they give something to deal with say the pain in her wrists/forearms then it will give her a better quality of life and let her continue her education without too many detrimental effects. Where as the physio will only deal with say the tightness in her hamstrings but not realise that she also has problems in her calfs which were a knock on effect of her flat feet, the flat feet were causing problems with her calfs which then knocked back onto her hamstrings which were weakened by a problem when her knee sublaxed and took a few months to recover from

    • Majella Waters says:

      my main complaint is the physiotherpy service. I realise there is not enought physiotherpist but seeing a child who has a lot of problem with balance and weak muscles once every six months is not enought. I recently got a list of excerise to do with my daughter. Some i am able to do but others i need to be showen how to do properly. This sheet usually turn up a month after you have seen the physio therefore any thing you talked about you have forgoten or the excerise has changed.

  2. joanne pilgrim says:

    we were told our daughter had asd then after that there was no one to talk to no one was there,we now want OT to come to school which could take a year when at this age(7)she needs to see someone know she has fine and gross motor skills problems and always have they should do a follow up and would have found her difficultys with writing and doing physical activitys instead of us having to fight yet again to see someone there needs to be constant follow ups

  3. Kate Faz says:

    Q) Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?

    A) For children with diabetes, I would say the weakest link is the very variable standards of care around the country which range from centres of excellence providing state of the art care and expert advice to inadequate provision with parents often unaware of how poorly their children are being cared for in comparison.

    Q) With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?

    A) Specialists in long term conditions need to work together not only locally but nationally to drive up standards of care. Although this is happening led by the experts in the field, there needs to be more involvement from those teams that are providing inadequate services.

    Q) The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?
    See outcomes specific to children and young people in these frameworks

    A) Education and empowerment are missing. For diabetes, children and their families need to understand their condition properly and understand the complex managment involved to live long and healthy lives.

  4. BWhite says:

    Q. Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?
    A. At the point of birth/diagnosis more work must be done on providing counselling services for parents and the wider families. Even if it is delayed after the the family comes to terms, services that focus on the positive aspects (like Portage) should become involved to support the families. Training for health professionals on language to be used would also ease the families potential trauma.
    More services for children with mental health issues need to be made available.

    Q. With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?
    A. Information to parents needs to be consistent and in plain English. The potential journeys for families should be made clear and support workers should be put in place. For many children with issues like autism, more work should be done on making facilities child friendly. Waiting for long periods of time with autisitc children can cause much anxiety.
    More work needs to be done to ensure all children are seen by their health visitor and 2 1/2 – and parents should not be able to opt out, as they may not be aware that their child is experiencing delays in development. More training for HV’s to identify issues and emerging needs, and assessments should be made within childcare settings where the child can be seen in their environemnt and with their peers.

    Q. The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?

    A. Information for parents, support structures to help through the journey, plain English from professionals and a focus not just on what the children may not acheive.

  5. Vicki worth says:

    communication has been our biggest bug bear. My son sees two consultants and the associated nurse specialists and dietician and SALT. This is just for his medical needs we are seen by 4 other clinics in association with his Downs syndrome. We also get his medical equipment supplies from 3 different companies as well as using the local chemist for his drugs. I very rarely take him to the GP but its the GP who is key to the prescribing. All to often letters are “lost”, incorrectly scanned, drugs and equipment incorrectly prescribed or missed off from the request list. This is definitely the weakest link. When my son was younger we had Team around the child, this got all of the local health care professionals together every 6 months to focus on the child not the bits of him the individually they dealt with. Now he is of school age the school has an annual review but the medical needs and social services are indifferent to taking part as they see this as schooling issues not a focus on the child. With his medical needs being dealt with at a regional children’s hospital it becomes even more difficult but I would like to see an annual cross review for children with very complex needs. I deal with over 40 individuals or agencies for my child have become his administrator as well as his carer, sometime I feel that I left motherhood behind along time ago.

    • SFisher says:

      I agree with the issues about serivces for Down Syndrome. My daughter is just transitioning from early years to school age services and whilst we had fantastic early years support and team around the child for the first 3 years of her life, as soon as a key member of staff retired, the whole team crumbled and we have had to fight for every appointment since, on an individual basis with each specialism, with us,as parents, coordinating all the appointments and remembering to phone when we have not been sent follow up appointments. This is extremely challenging as all parents in this position will know. The very early support that we had, and the fantastic SEN team at school, means that we are now well enough positioned that my daughter has not been unduly affected by the withdrawl of the team in the last 2 years. This marks the importance of early years support to faciilate the inital contacts with the myriad of services which our children need to accessand to educate parents regarding appropriate times at which to contact the services.
      As with many services, my daughter is likely to be discharged by physio and OT who are currently giving assessment and advice on a regular basis, but from whom there is currently no active treatment. This is on the basis that we can “get a referral if we need one”. My argument against this is that I do not know that we need a referral until a preventable problem is entrenched, wheras someone with professional training can predict problems as the warning signs occur. I understand that resources need to be managed, but I do feel that discharge and re-referral is not a good model for future independence for our children. If we are trying to enable our children to become independent adults, who will eventually manage their own health, then an understaning of how they can be facilitated to achieve this should be considered. For my daughter to manage healthcare on a piecemeal basis could very well be unachievable; even if she has the insight to the fact that she needs some input, the motivation to search out the appropriate professional/referral pathway and keep chasing when the appointment does not come through, is likely to be a major barrier to the maintenance of good health. Conversely, if she has regular appointments with key services who can then refer on, she is likely to be able to be able to be trained to take the management of these appointments over as a teenager and young adult, with a high rate of compliance, and surely this is more appropriate self care?
      A long term approach to healthcare management, which takes a lifetime view of the issues for individuals, considers health promotion/ prevention rather than cure, which brings down the boundaries between health, social care, education and employment, and which is appriopriately funded across all sectors is really important. The economy needs to be a sector economy, not a health , education or social care economy.

  6. Neal Carter says:

    Q. Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?

    A. I am a Children’s Nurse and am seeing the full effects to NHS children’s services in North Devon and how we as a service seem to get forgotten in all the changes currently taking place. Here, Integrated Children’s Services within NHS Devon, Children’s and Family services are facing a bleak outlook, with the possibility of the breaking up of services; literally only just after they have all moved into together into a brand new build in January, to improve upon communication, networking etc. We are told by politicians that the NHS is not being privatised, however many services around the country are now already being run by the likes of Virgin, Barnados etc. In North Devon, Serco are currently in a strong bid to take over the running of many community services (as they have in Cornwall). However integrated children’s services, who provide care to complex care children and young people as well as Mental Health services etc seem to be left in the dark about what is happening to their services and understandably are all concerned about their jobs, effects on services, effects on patient care, staff moral etc etc. The way the government (DH) is allowing this back door privatisation to take place, is frankly deceiving, unfair to the service users, staff and wrong. I have always joked that the NHS will be run by TESCO (NHS-CO!). Now unbelievably it could conceivably become a reality as the government allow tender for contracts from all different walks of the private sector, who have no idea about running health care services! I am sure that if the parents of children and young people knew what was potentially to happen to their local children’s service then there would be a public out cry. The staff who are concerned about redundancy etc I suppose could maybe get a transfer to the checkouts! I agree there is a lot of wasted money in the NHS and services could be better managed and streamlined, so that the money goes into patient care but with all the current changes taking place all that is happening is that the more wasted money is being spent on more unnecessary dramatic changes which in turn affects the lives of those who use the NHS and those who work in it.

  7. Victoria Romero says:

    I agree with BWhite above, much too little is done at the point of diagnosis (I speak with experience of Autism and ADHD but know it is true of many other conditions). Parents are left alone to cope with a huge life change, and charities such as the National Autistic Society do a great deal essentially doing the NHS’s job. Surey the EarlyBird scheme should be government funded for instance?

    Also, there seems to be a lot of miscommunication between the “experts” – when you have CAMHS, GP, Community Paediatrician and Hospital Consultants in London and locally all involved, it is left to the parent to act as a central liaison, even to the point of informing each person of drugs prescribed! This is extremely stressful and potentially dangerous.

    • Marina Magan says:

      Hi Victoria, I have a son of 10 years old with asd and adhd. Well all I can say your right thats how I feel you have to remind everybody whats going on all the time and as you say you have to tell them what medicine your child requires. Every time I get a letter I double check because once I had two appointments two months apart one being cancelled but look the same so I rang the health centre and they told me about the first appointment being cancelled which I knew nothing about I would have taken my son out of school to have gone, so I always double check but we shouldn’t have to.

  8. Sue Taylor says:

    Q. Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?
    A. We supply trained support workers to assist with children and young people suffering with ASD, ADHD, cerebral palsy, and other challenging conditions. One purchasing group within Kent County Council, for whom we have just tendered to supply for a further 3 years (KTT), has allowed a £2.00 per hour margin to supply staff to assist these children. Bearing in mind training for these staff is extensive, and needs to be maintained and monitored to ensure high levels of competence and care. However included on the same tender, staff who are hired to drive fork lift trucks or secretaries for instance, and agencies who supply these staff on contract or temporary basis are allocated £3 or £4 margin… This leads one to believe that children with complex needs are viewed way down the pecking order doesn’t it?? Priorities need to be re-assessed. Other views on this would be appreciated.

  9. Doreen Dawson says:

    Built in to all proposals must be a vision for the future, as a parent and professional working with people with disabilities I am all too aware of the tremendous black hole both in health and social care when a young person leaves school. No concrete provision by Social services to help make daily life meaningful no designated Drs for disabled adults, whose medical/ health needs are so different to the general population.

  10. Julie sime says:

    I can associate and sympathise with a lot of the comments made, caring for a child/young adult with ASD and complex needs. I have now managed to obtain some very good support from CAMHS. I think we desperately need more support of this quality and standard. And early intervention is important.

  11. Zoe Carroll says:

    ■Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?

    After diagnosis we recieved minimal information about our childs condition which we had never heard of before his diagnosis (fragile x syndrome). It was left to us as parents to research and investigate and to advise medical and health professionals about his various difficulties and medication options. Regional information events would be useful and bring experts together with families and medical and health professionals to raise awareness and engagement. We also had to be proactive in getting support from carers organisations etc, if we were less proactive our child and our familiy would be struggling more than we are now.

    I think a more holistic approach, realising that parents and siblings of an affected child also need support and should recieve information about the mental health aspects (such as depression) related to having a child with a long term disability.

    I also agree with Victoria Romero above that the parents have to act as the administrator between numerous agencies and appointments. The Team around the Child and Early Years support team are great and more of this type of support should be offered at the point of diagnosis and be on-going even into school as the above commenter raised that medical and health concerns do not go away when the child starts school.

  12. A Middleton says:

    Joining up the system and improving access to the parts of the NHS this disabled child needs is the answer to the majority of questions raised by the government here.

    If a child needs SALT for example they should have easy access without a huge waiting list (I do not care what the UK figures say, there ARE children in the UK today who have been waiting months to see the healthcare professional the need to).

    If a child lives in an area where a specialist doesn’t exist, is it right that they are told that this “isn’t done” in this area? What do we do then, move?

    A child should not have to rely on them having an intelligent and proactive parent in order for them to be seen by the right person in a timely fashion.

    Why do parents who are already having to care for a disabled child have to take on the system just for their child to be helped?

  13. Lorelai Prosser says:

    I have Ehlers-Danlos Syndrome type III (Hypermobility), as do my 4 children. I also work as a support worker in a residential home for adults with learning difficulties.

    I don’t even know where to start with this. I think first of all, the simplest thing to do would be that each specialism such as orthotist/CLDT/physiotherapist etc, operated 2 lists. Current patients and those that have had treatment but don’t currently need any, who under the current arrangement will be discharged from the ‘list’. So 18 months later or so, you have to go back to your GP to get another referral. This seems such a waste of time when the problem is ongoing, as it often is with medical conditions, as opposed to a broken leg for example. The same could be said of social workers, at work we have a constant problem with getting allocated social workers. It can be several weeks and many, many phone calls to get someone to deal with the matter. You would think an adult with Down’s Syndrome and dementia would have an allocated social worker, especially as they have ongoing medical problems that require frequent best interest meetings, which can’t be arranged without a social worker. One of many examples I could give. I don’t think that the funding authority should remain the same as when they person was a child, when they move, the funding authority should move. We have have many residents who moved in over 30 years ago, some more than 40 years, but the funding authority is hundreds of miles away. the funding should be dealt with centrally, then perhaps there wouldn’t be the constant battle to get money from some authorities to meet the changing needs. The money could then be ringfenced.

    I would also like to see a medical specialism for those with complex health issues along the same lines as a Geriatrician for the elderly. They may exist so I stand to be corrected, but I have never come across one. I would even go as far as saying each town should have a dedicated medical centre to deal with people with learning difficulties, offering GPs and dentists who are trained to deal with the behavioural issues involved. There could be rooms for the clinics such as orthotist, physio, paediatrician, psychiatric, CLDT, hearing, dietician etc. This should contribute to a more streamlined system for those with more complex needs. They may also be able to access other treatment such as for an enlarged prostate. One GP expressed surprise that a very deaf resident with Down’s Syndrome would want hearing aids – had to be very insistent to get a referral

    There should be a minimum care standard from cradle to grave, so that everyone has the same access to care, equipment and services. Whilst money is a big factor, it should not be the primary consideration. Example, all those requiring inco pads were all moved to the cheapest available, so one resident lost the skill of changing her own ‘pull up’ as they were replaced with conventional side tabs, which she can’t manage. They were reduced to a maximum of 3 per day – but if I left a child in nappy for 8 hours at a time I’m pretty sure social services would have something to say! Additional pads have to be bought and most only have a small fixed income. It should be based on need not cost.

    I would agree with the comments on having to be proactive when dealing with the Professionals. I’m blessed with a brilliant GP, but I’ve had difficulties with other NHS professionals – having been accused of being a liar by both a hospital anaesthetist and an obstetrician, unfortunately my massive haemorrhage just proved me right! The fact that they have ‘never heard of that’ does not mean it does not exist, it just demonstrates they have a large gap in their knowledge. We don’t want to feel like we have to fight, we need to be helped and guided. I used to do a lot of computer research in my previous job and am well used to dealing with ‘Professionals’, often having a much better knowledge than they do of the subject (I worked for HMRC). I just do the same now for our medical issues. I despair for those who don’t have someone able to fight their corner.

    Conclusion, ‘the system’ is not just the NHS and it all needs to ‘join up’ to offer the best and most cost effective care plan. It is disjointed and inefficient as it is.

  14. Di Rickard says:

    At MOVE Europe (www.move-europe.org.uk) our focus is facilitating improved quality of life through co-ordinated family-centred children’s services for the families of children with complex disabilities Many of the voiced concerns centre on the need for a more holistic family centred approach with health professionals providing a co-ordinated service with colleagues in Education and Social Services. Although this has been the national focus for many years, the logistics of making this a reality and necessary changes in established work practices are often more difficult to achieve. As Director of Development and Training for MOVE Europe, my responsibility is working with Children’s Services to enable a greater degree of trans-disciplinary collaboration. This is achieved through multi-agency training courses resulting in improved children’s serices in many areas of the UK.

  15. Pru Allington-Smith says:

    I am a Consultant Psychiatrist for Children who have a learning disability working in the West Midlands in a community service and also a specialised in-patient unit for adolescents. I see children who have a learning disability and psychiatric, behavioural or emotional problems. 50% of children with a learning disability have behavioural problems. Many also have autism.
    Many of the children who end up being admitted have received either no, or very poor psychiatric services locally and as a result have major problems often leading to family breakdown. There are still many areas where they are not seen in CAMHS despite recent clear guidance. From my community service I see the clear advantage in early input and multi-disciplinary support for families (from nursing, psychology, psychiatry, SALT and OT). I have not had to admit anyone from my area for over 5 years. My colleague with a poorly resourced service has several children in all the time. The cost of inpatient care for one child is much more than the cost of providing community support.
    Providing good, early care to families prevents family breakdowns and children being placed away from home in expensive provision.
    At the moment the only questions Trusts have had to answer about local provision is whether they provide it. They can answer yes if they have one very part time nurse or a fully functioning and skilled team. Clearer standard should be set. QINMAC guidelines and guidance on services is available through the Royal College of Psychiatrists ( and me!)

    • SFisher says:

      Similarly there are issues for children with physical disabilities – preventative measures e.g 24 hr postural support management systems – which are funded from social services pots of money usually, and occasionally nursing pots of money- can prevent physical deformity from occuring if their use is implemented soon enough. In turn this reduces the number of medical and surgical interventions eg chest infections, digestive system problems, pressure sores, disolcated joints etc thus reducing the health costs. The child sleeps better and has fewer periods of illness, therefore is more able to attend school, and has potential to perform better whilst they are there. This can result in a better educated child who has more potential to be self caring and or economically active as an adult and possibly reducing the amount of benefit and social support required as an adult. The economic argument (which rightly or wrongly seems to be more powerful than the human experience argument) is compelling for early intervention and illness prevention; however the economic barriers are massive for implementation, because of the lack of joined up economy across sectors – initial costs will be from social services and medium term savings will be health, especially the acute sector with potential drug savings in primary care. Long term savings will be health and possibly social care. The costs and savings are not within the same division of the economy and so money is not made available to provide services for prevention. With an ever aging population, alot of DOH focus is being devoted to health promotion across all health sectors to promote healthy lives – can we have a strong focus on (and investment in) prevention of long term problems in our children with physical and learning difficulties please?

  16. Goshua says:

    More research and Diagnosis is needed in the Area of Foetal alcohol syndrome and Foetal alcohol spectrum disorders most children have
    multiple problems, FAS/D is effecting 1/300 births a year , yet is left too
    Charity’s such as http://www.fasaware.co.uk and Nofasuk too lead.
    Yet BMA FASD report and recommendations 2007 are quite explicit.

  17. K Molloy says:

    I am a Health Visitor and a mother of a son with complex learning and medical needs and this gives me an insight from both a personal and professional perspective.
    As a mother the lack of cohesion and communication within health particularly is a massive stress on me as a carer to my son. I have had some wonderful professionals involved with my son but often each discipline looks at the child from their perspective rather as mentioned above as a holistic member of a family. This lack of communication puts pressure on me as a parent to act and often fight as an advocate for my son to ensure his needs are met. This results in the involvement of professionals often adding stress to my family rather than the support they should be providing.
    Services for children with complex needs whatever the needs are should be focused with the family in mind. At times I have had over 15 professionals involved in meeting my son’s health needs (not including education and social professionals) and each professional saw me as the key to coordinate the services. The design of health services should include recognition of the pressure of families to attend numerous appointments and wherever possible multi agency clinics would help where the young person and their carer can attend a clinic where they can see numerous professionals rather than having to attend numerous ones at different venues. This would really help both parents and professionals to communicate together to plan to meet the needs of the child.
    This has become much more important with the health policies of recent years where services have moved from local providers to more regional specialist centres. This has resulted in families having to travel considerable distances to see consultants and specialist nurses which again Impacts on family life massively.
    From a professional perspective working with families with children under 5 years this is often the time where the journey for families starts and as all research identifies early intervention is vital for these families. The family not only needs support to deal with the emotional impact of having a child with any additional need but also to provide the family with the skills they need to deal with their journey ahead including information on services, information about their child’s condition, how to deal with professionals and how to obtain the best outcomes for their child and family.
    At present the support given to families varies considerably with different areas having massive disparity in the resources available. In the area I work for example the support given to families is the responsibility of the generic health visiting service. Due to the massive pressures particularly safeguarding and delivery of the child health programme support of these families can be difficult to give. I also know that colleagues find giving this support difficult due to the complex systems involved in coordinating the responsibilities of health, education and social care. I would argue if professionals find it difficult how must the parents feel?
    Another issue within health which needs addressing is training. I recently completed my degree in health visiting and in an intensive 12 month course we had a half day lecture on working with families with a child with complex needs!!! I also know that medical programmes do not have a massive input of training for working with these families. My old GP used to send doctors and medical students to my home when my son was younger to obtain a history to gain experience and I never had a doctor leave who wasn’t completely astounded about the number of professionals, impact on family life etc, etc… my son’s health needs had. I do believe that early intervention is the key to improving outcomes for children and families with complex needs but this needs to be done by professionals who are specially trained and up to date who can develop families skills and empower them and who can also inform and train colleagues which will hopefully impact on their practice.
    To summarise, in an economic climate that means we have to look at health care most of the previous comments discuss issues such as communication and coordination of services which does not have to cost the health service more money particularly in this technological age!! What it does need however are well trained health professionals who are informed of the impact of planning services that meet the needs of families rather than professional need. This is of particular importance when the new health care bill comes into force and service provision and redesign will become a much bigger concern. If we don’t do this the public health impact of having a child with additional health or learning needs will be massive for families and this continues forever for that family so if we don’t get it right and invest properly in supportive services the long term costs will be massive.

  18. Rasmikanta says:

    A one stop health shop in each town would be hupflel. This could also be hosted in a library. It would be a one stop place where people could get information on all of the health services available to them to access across all sectors including the voluntary sector. It could be run by trained local volunteers who ould assist people to look at services that might be appropriate for them. For example a person who is depressed because of debt could be directed to MIND, CAB etc. You could have written leaflets and access to info online. You could have sessions specifically when translators are available for different groups. There are so many services out there but people just dont know about them or how to access them, and most health professionals just cannot keep up with all the support services that are available.

  19. Pauline Hamilton says:

    Where to start?
    Ensure “Early Support” is active in all areas! For 15 years we have been having to repeat the same story, time and time again to each professional. Surely in this day and age it is possible to have a simple record kept by the family or on medical record that could be given to all.
    More pediatricians so waiting times reduced and reviews can be done regularly.
    NHS records “flagged” to show child has disability, so not called for universal checks by professionals with no knowledge of child’s problems.
    Look at transition and bring clarity to when children become adults under various NHS services.
    Realise one size does not fit all for things like incontinence and wheelchairs, and that children grow quickly and regularly change their needs.
    Ensure hospital teachers have knowledge of learning disabilities and cater for them.
    Ensure CAMHs includes children with learning and communication difficulties or even better have some other support for behaviour problems related to disability. (We were recently told it was the wrong service but offered no alternative)
    A good start would be a keyworker system with enough knowledge training to help families navigate the system.
    Dare I say good communication between relevant professionals involved and shared budgets so everyone does not think everyone else has responsibility for paying for child’s needs.
    System presently depends on good will of professionals many who try hard but find systems prevent good practice rather than help it. Privatisation of services will make it more difficult for families not easier as there will be even less cooperation.
    This is not meant to be a complaint of local services who do their best but at times seem to have one hand if not two tied behind their backs.

  20. Karen Alred says:

    As a community staff nurse for children with disabilities (learning) in special schools and trainee school nurse I have found that the examples I have just read are similar to experiences of families I work with. There is poor early support for parents, indifference from professionals, passing the responsibility to any other service possible, lack of co-ordination and communication. Often, good practice is down to one practitioner who has a great deal of local knowledge but as they retire/move/change in service or funding withdrawn on the service is left wanting. I try to work within the mutidisciplinary setting but as children are often placed in our local special schools from elsewhere, the ‘health’ provision provided (SALT,OT,Physio) is only officially applicable to children who have a GP in our area. As different areas have different commissioning practices, services provided by one service in one area are not provided by the same service in another area. This makes “integrated” working virtually impossible. With GP consortia commissioning I can only envisage that the ‘good will’ provision will cease, leaving children and families with accessing services within their locality and having to take time out of school to achieve this.
    With all the changes being brought in by the government, practitioners across the board are having to work out what the implications are as they go along, with implimentaion without thinking through practicalities, and as this is often this is down to local interpretation, it gives the opt out clause that this isn’t down to their service. The government needs to understand that providing appropriate levels of support is expensive, there are more children with more and more complex health needs requiring support at a time when funding is dramatically reduced, wider support services no longer being funded and professionals (across all services) at the lowest moral that I have ever known (been working since early 1980′s). Without those additional services to support the work of public health practitioners, social workers, teachers, GP’s etc how can we provide the services that children, young people and their families deserve? The cost to the tax payer is far greater if families end up in crisis and not coping and unfortunately, this is where the majority of services ends up being used, leaving little room for the early support, intervention or prevention work that could make such a difference.
    Families feel let down and that professionals are ‘useless’, although I would argue they are not useless, just powerless. This is in sharp contrast to what I am being taught in university about the leadership and innovation that we are expected to provide in our roles as health visitors and school nurses. We’re told that we are at the forefront of leading the service in providing innovative services but how can that be achieved without resources? The level of need is such that we often don’t know where to start, feel overwhelemed and wonder whether working at tesco would be the better option.
    Having said all that, I love my job, I’m passionate about trying to get the right service at the right time to the right people and if I only achieve this some of the time then at least thats a start and I’ll always aim to improve that.

  21. Roderick Duncan says:

    Q Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?
    A 1. Communication between different agancies involved in the care of children and young people 2. there is a need for standardisation of treatment between medical staff and AHPs 3. a need for standardised assessment of outcomes of treatment based on the ICF Framework for Disability using generic and disease-specific outcome measures 4. transition to adult specialties, particularly in orthopaedics 5. Inequality in uptake of services – sometimes those who make the loudest noise get the a bigger slice of limited resources, rather than these resources going to those with the greatest need.

    Q. With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?
    A. Communication

    Q The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?
    A The priorities are right. According to recent research published in the BMJ England has one of the highest rates of burnout in nursing staff in the centres in both Europe and the USA which were studied. England also had one of the highest rates of staff planning to leave the service in the next year. Morale in nursing is clearly very low. Care of the staff involved in delivering care to children and young people must be included.

  22. Ben Mayers says:

    Q Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?

    2 areas:

    1. Communication between the variety of professionals, departments, agencies, care givers and hospitals is often poor.

    2. Professionals are too focused upon their own expertise without taking any consideration of the wider implications for their treatments. This is, in part, due a narrow focus within each discipline to be targeted on too narrow outcomes.

    Q. With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?

    A broader view of a child’s needs within their specific context and treatments which considers this view and experts to be allowed the small amount of time it would take to consider the broader view. In the long run this will result in much more effective treatment, less conflicting advice, greater communication between experts and a net time saving for all parties.

    On a more basic level, getting hold of people within large hospitals is very time consuming and tedious. This is true for parents as well as medical experts. There appears to not be a culture of pro-actively responding to results nor returning phone calls or emails which means that inordinate amount of time needs to be put in chasing professionals. This is a huge waste of time.

    Q The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?

    If ‘preventative action’ was prioritised then many of the issues would simply not occur. In the instance of my son this may have resulted in a incalculably improved outcome, and I suspect that is true for many diagnosis.

  23. Joanne Perks says:

    I would like to see waiting times not as long, having to wait for a diagnosis for my son who has suspected asd, and the waiting list is 12-18 months. Also areas to be more child friendly,for people with asd, also health professions to be more understanding eg a+e many times I have had to come out with my son without being seen,as many people with autism or asd do not like waiting, my son gets really frustrated and upset, when I’ve explained to the nurse depending who it is, some try to get him early, others look at me with disgust and tell me tough wait in so many words.

  24. Dr Tim Clayton says:

    Atopic Eczema effects 1 in 5 children. Many children with eczema cannot sleep at night, suffer from recurrent infections, miss school and suffer from growth delay as a result of their skin condition. It has been shown that chronic eczema has a worse effect on quality of life scores than insulin dependant diabetes. It is essential that every city has a team of doctors and nurses working together to help these children. Indeed chronic skin diseases in general are often overlooked as “non-serious” when compared to internal medical conditions. More funding and support is needed to help children with chronic skin dieases.

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