Select Committee on Education and Skills Written Evidence


Memorandum submitted by the Society for Mucopolysaccharide Diseases

  1.  The Society for Mucopolysaccharide Diseases is patient representation service advocating for the needs of those with Mucopolysaccharide (MPS) or Related diseases. We are a charitable organisation supporting a group of diseases which are extremely rare and multi faceted resulting in a range of complex physical and learning difficulties which present in varying degrees depending on the disease. The majority of these diseases are life limiting resulting in death in childhood and are progressive, degenerative conditions. As an organisation that commits itself to working alongside these families to represent their needs on a daily basis, we believe that we are well placed to submit information which will be of benefit to this inquiry. We work with families all over the UK and therefore are in constant contact with Local Education Authorities and schools. We undertake numerous visits to these schools and are afforded the opportunity in most cases to assess, and contribute to Statements of Special Educational Needs to ensure that the school provision reflects the individual child's needs in relation to their disease.

  2.  Overall, we face a number of difficulties when supporting families to ensure their child's Special Educational Needs are met. We find continually that educational establishments are not designed to provide for those with multi-organ progressive conditions with associated learning difficulties and usually not in a mainstream environment. Some children can deteriorate very rapidly, even overnight, which means flexibility of approach to the child's condition to ensure they can maximise their educational potential, is of paramount importance. A number of our diseases, namely MPS 1, II, III and ML II encompass a neurodegenerative element, which means that skills learnt are gradually lost as the disease progresses. This means that again, the child's curriculum needs to focus on what the children are most receptive too as they will be unable to meet educational targets as their condition deteriorates. The school day has to fit around their needs, with caring and nursing needs becoming paramount as the disease progresses. A majority of schools are not set up to deal with this need to balance care with education and will often reject the children on the grounds that they do not `fit' within their current educational system. Often, this group of children's' behaviour is perceived as `deliberate' and `attention seeking' rather than acknowledgement that due to the neurological nature of the disease this group of children display unpredictable aggressive behaviour, which they cannot be held accountable for.

  3.  As highlighted above, these diseases are extremely rare and therefore there are very few people who will have ever heard of them, even doctors and paediatricians at the height of their profession. It is often the parents, not the professionals who become the experts on their child's condition and it is vitally important that they have a full and active part in the statementing process and beyond. Yearly annual reviews are not sufficient for these children, neither is the absence of the Local Educational Authority, which is often our experience. As the condition can change so rapidly, funding often becomes an issue, with parents having to defend their right for one to one support for their child. There is no doubt that in order for every child with an MPS or Related Disease to exercise their full educational potential, they need one to one, or sometimes two to one support to ensure their safety and others in an educational environment. Without this it is highly likely that they will not reach their potential or have a flexible, creative curriculum, which fully meets their complex, needs.

CASE STUDY:  CHILD A

  The situation concerning Child A, who has Sanfilippo disease (MPS III), relates to ongoing issues with school from 2001. This case highlights the difficulties that can amount from schools not understanding the disease or its manifestations.

  The school did not understand the issues around Child A's disease particularly concerning his behaviour and were not providing a flexible programme to accommodate this. Child A was isolated from his classmates at a time when he should be constantly supported within the classroom setting to interact as much as possible. He was forced to eat in the dining hall at lunchtimes even though he liked to eat in isolation as he does not like large crowds of people and high levels of noise. This was further impacting on his behaviour, which he could not be held accountable for. Child A was excluded two to three times due to behaviour and violent outbursts which could have been avoided with better understanding and management.

  Child A was refused a place in the school's 6th Form as a consequence of these behaviour issues, there was no attempt to work through the concerns and the reasons they were occurring, Child A was excluded from the educational setting because his school were not willing to accommodate his diverse and complex needs.

  His last exclusion was a fixed term exclusion for eight days (plus two weeks for the Christmas break) due to violence and issues were raised over the length of time Child A was to be excluded. The exclusion was extended and Child A was only offered a return on a part-time basis. An official meeting was set up to meet with the school and the school governors.

  Issues were raised with future school needs. No suitable educational placement was available. The family were told that if this was pursued, Child A's 6th Form statement would be removed. At this point, legal advice was sought, as well as support from the MP.

  Legal action was instigated, investigations taken forward to look at educational placements and the lack of support and services for individuals with severe learning difficulties. A meeting was set up with the Education Department to discuss new provisions being developed for Child A and others in the area with severe learning difficulties.

  The MPS Society worked with the education department in setting up a specialist provision for Child A. 2:1 support was agreed as part of this provision. A new Statement of Special Educational Needs was set up, stating clearly Child A's needs and how they should be met, along with a new ethos of working. Training was given by the MPS Society and continues to be given when new members of staff join. A meeting was co-ordinated with the school and the family and an introductory meeting was set up for Child A and his parents to visit the school and the teachers.

  This case highlights the consequences of not understanding the manifestations of the disease and also the positive outcome of the local education authority working closely with the MPS Society to devise provision which adequately meets Child A's current and future needs in relation to the progression of the disease.

CASE STUDY:  CHILD B

  In this situation, concerns were raised by Child B's (who also has Sanfilippo Disease, MPS III) parents regarding her current school which was to close down in the near future due to government initiatives to have more inclusive education in mainstream schools. The family were not opposed to this for those individuals it would benefit, but for Child B they felt she would not be adequately supported in this environment. This was due to the high level of support she requires both educationally and physically, and accommodation of her changing medical needs which would leave her extremely vulnerable if moved into a mainstream setting.

  The only other school available to the family refused to take on students as classes were too large and they did not have the nurses available to meet needs. Due to staff cutbacks the level of support and care for Child B had declined. Child B was supposed to have 1:1 support but this was not happening. This was placing Child B at considerable risk.

  The family have had meetings with the school and education authority, involving other families and the MP but felt they were not making progress, and their needs and concerns for Child B were being ignored.

  The MPS Society put the family in touch with legal services who took up the family's case. They addressed issues concerning the educational provision that will be made for Child B after the summer holiday.

  The MPS Society continues to provide support with amendments to the SEN Statement. A report and supporting information has been provided to the local education authority. The SEN Statement did not address Child B's needs and how they should be met resulting in Child B being put at risk in an educational environment.

  The family refused to send Child B to her existing school in September due to lack of support and concerns for her safety. The school agreed to meet to look at the needs and write a care plan to address the supports Child B needs. This did not happen and no care plan was drawn up by the school. The family sent Child B to school on the proviso that a parent would accompany her until they felt comfortable with leaving her. The statement was reviewed, however there are still outstanding issues with the proposed statement. The family are awaiting a meeting, and a letter of complaint has been sent by their Solicitor. The family have considered moving Child B to a school out of the area as they feel this is the only way her needs will be met.

4.  SUMMARY

  These two case studies above are only a small part of the educational support parents are requesting from the MPS Society due to the lack of understanding and provision to meet their child's needs. In these cases the extreme circumstances led to legal action being taken to address serious concerns which would have arisen if these children had continued to attend an inappropriate educational setting to ensure the children receive the education which they are entitled to.

  Below is a list of frequent concerns we face when supporting these families, which have to be addressed in any educational placement for this group of children.

    —  adequate facilities to assist with the frequent changing of nappies;

    —  lack of medical management in relation to specific aspects of the disease, particularly feeding can result in a high risk of choking which raises concerns around the health and safety of the child while at school;

    —  minimal concentration span which results in children requiring constant 1:1 support in order to be kept on task;

    —  extreme tiredness from sleep disturbance which means these children can often be awake for much of the night is not acknowledged or accommodated as it does not "fit" with the school day;

    —  lack of accommodation of the child's medical condition which is associated with their behaviour and other needs which means they are often left at risk of injury which, at worst, can result in paralysis if not managed appropriately;

    —  no facilities available for the children who require gastrostomy feeding as their condition deteriorates; and

    —  targets and expectations placed on this group of children are unrealistic knowing that these children are not going to progress. Accommodation of their educational needs specific to their condition is often ignored as they do not meet the targets set out in Individual Education Plans

  Unless this group of children's needs are addressed within an educational environment, they face at best poor educational provision and at worst the risk of their safety being compromised by a lack of understanding and commitment to meeting these complex medical and progressive conditions.

October 2005



 
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