Serious failure of service? S.A.L.T.

Apologies firstly as this post is now some months on from your original posting and hopefully you may have had some progress.  Commissioning of CCG pathways is not your problem, it is the CCG and local authority's problem...you are being fobbed off.  However, if you haven't made progress, I would suggest the following:

1. You should submit a complaint to the Chief Executive of the parent NHS Trust that provides the SALT service, and in particular state that you consider that the delay is neglect/a safeguarding issue, that you intent to write to the CQC about that Trust, and that it will be your intention to write to the Parliamentary and Health Service Ombudsman in the absence of a prompt resolution to your complaint (mention the Winterbourne Scandal report).  You could alternatively complain to the CCG but are more likely to get a 'we have to manage our limited funds' response, which is inappropriate.

2. You or your school need to submit to your local authority for an EHC assessment. This assessment should include a SLT assessment for the purposes of education/communication.  If the LA-commissioned SALT provider cannot provide an assessment within the statutory six week time period, the LA should pay for this seperately. You should make it clear that if the LA does not agree for an EHC plan at the end of the assessment process, you will submit to a SEND Tribunal.

3.  You should contact your local MP and request that he writes on your behalf.

4.  You need to keep a file, maintain minutes of every meeting, including at school, avoid informal conversations and instead email interact and keep all emails.

5.  You should request your GP to refer to your local paediatric neurorehab consultant.  Medical appointments are subject to national pathway targets whereas speech therapists/allied healthcare professionals are not.

6.  You could also consider writing to your local Children's Safeguarding Board, again flagging up 'neglect'.

7.  If any service manager writing to you is a registered SALT professional, you could submit a complaint about them (for lack of service planning and safeguarding) to their national registrations body Health and Care Professions Council.  That will certainly cause them to focus irrespective of outcome of complaint.

8.  Finally, if it is SALT opinion for the purpose of communication/education, remember it is a local authority not an NHS problem, and they should be paying for this specifically for your child if their local contracted NHS provider is not in a position to provide.  The school SENCO should be looking to facilitate this through the local authority inclusion officer.

9.  We have found seeking a payed for private/independent opinion very useful and a jumping board to proceed further...it is worth the money.  Ensure any private SALT has stated relevant expertise for autism and also is familiar with submitting to a SEND Tribunal.

In any of these interactions, you should flag up how your child is struggling from a communication (i.e., educational and ultimately the responsibility of the LA) and mental health point of view.  Include any behavioural dificulties and bullying issues, all building a safeguarding case.  Safeguarding is the one issue that makes local authority and NHS personnel stop and think...

Also your Smartphone video clips of your child...very useful and easily produced in meetings and kept on file just in case, when you have somebody not actingprimarily on behalf of your child (as is the their statutory responsibility/duty of care as a public service employee).

Apologies if this comes across as intense, SALT provision is the current bee in my bonnet.  I am a hardened SEND Tribunal veteran.  I am also a senior clinical manager in the NHS in neuroscience so have insight how it works.  Best of luck.

[I posted this before seeing Avi's response]

It's entirely reasonable to be cautious with respect to libel law. Can we be assured that the NAS is collating such issues and making representations about potentially under- performing bodies?

Practically speaking, people make complaints about public bodies through the media on a regular basis. Public bodies rarely (ever?) resort to libel law so I would think the issue is not enough to prevent an organisation being named. Clearly if the OP had a crazed and unbalanced rant about someone then that would be different. The situation is very different if a commercial organisation is named as lost reputation can then be assigned a value but this does not apply to NHS or local authorities.

Programmes such as Watchdog regularly take the risk of libel every time a rogue firm is named. I presume that they have lawyers to hand before airing such complaints. Does DaddyOfTwo have to go through the BBC rather than through NAS?

Hi all,

We appreciate your difficulties in regards to local services and there should be a space on here to discuss these and assist others. However, when posting about specific organisations in this way please pay attention to the Community Rules as Coco Mod points out. 

This wasn't done as a result of legal advice. We'd just like people to remain aware of the Community Rules.

In this case the title will stay the same for now but please continue to discuss the issues raised in the thread.

Take care,

Avi

Fair point, but do the Mods have anything to suggest in response to OP's question?

There are worrying differences between different parts of the country in terms of provision, and there are points here to which NAS should be alerted, and should be protesting/campaigning about.

Even if you have edited it, OP's concerns were about particular local services.

@recombinantsocks - to complain about a specific organisation is mentioned in the rules of this forum. Only the name of the organisation was removed. All complaints should be directed formally directly to the organisation to avoid libel law.

community.autism.org.uk/rules

Rule 7. Identifying individuals or specific services, especially when making complaints, may be considered libel and your post may be edited or removed to prevent this.

Was this editing done following legal advice? There is a public interest argument that would support his seeking to identify whether his problems are real problems and whether they are isolated incidents.

There is a recurring theme on the forum about the unreasonable difficulty that people have in obtaining reasonable treatment and advice from various bodies.

Can the original details please be reinstated or an assurance that formal legal advice from NAS has advised against it in this particular case?

Hi Daddy of Two, I have edited the title of your post, as it specifically mentioned an organisation, this may be considered as libel.

Kind regards,

Coco - Moderator

CCGs have certain undertakings made each year or several years. There is as you indicate a danger that new reviews will drop some pathways in order to shift the funding to the new priorities.

However there should be run-over time for the previous targets and people should not be affected the way you describe (notwithstanding funding is the really critical issue for doing anything - Cameron dreaming again...).

It does sound like your CCG is a wrong 'un, but use the PPG system to challenge this.

Join your local GP Patient Participation Group. Granted they may not have one that properly functions, but they are supposed to have them.

PPG Chairs attend regular meetings with the CCG. The Chairs can usually take someone along to a chairs meeting to present a case to the CCG. It might have to be put over as an illustration of a general problem, but you should be able to make your concerns heard through this medium.

The PPG system I suppose is something we have to thank the coalition government for, and subject to the new government it is here to stay. Broadly it lacks funds and depends on the level of community participation. The active members tend to be retired - it is difficult to get middle aged and younger people to go to their GPs often enough let alone participate in PPGs. But, it can give people the visibility they seek.

Your local authority should be providing forums/citizen panels that allow the public to question commissioning for autism, learning disability and mental health, as well as other disability areas. These should be provided by statutory organisations set up to monitor health. Again its the usual postcode lottery. But you should also be able to find such events taking place locally, which you can go along to.

As part of this process ciizen/community advocacy groups (currently not in the best of health) are supposed to rise from the ashes, money scarcity notwithstanding. Sadly Cameron tells us his dreams but isn't good at backing them up with money for realisation. But again they are supposed to act for people with disabilities who cannot sufficiently make their own case.

The big difficulty is publicising these services and opportunities.

Hi, this is shocking.  Sounds like your ccg is trying to cope with the cuts to their nhs budget allocation, but in an unfair way.  You could attend ccg meetings.  Do an online search for yours, if you haven't already.  You could contact your MP for an appointment to raise the issue.  You could start an online campaign via Change.org or similar.  You could go to the local press.  I know all this sounds rather desperate, but that's because it is.  My heart goes out to you + yours.  You could check out the nas home pg for a legal/human rights perspective, or the ipsea site.  I hope something gives for you soon.