They’re just total jerks!

This is what my 14 year old son had to say this morning when he saw the news about the Panorama programme last night.

He is 14, has autism and a learning disability, and I am thankful every single day that he is at home with us, living a happy life.

He saw the news and asked why it was happening but of course I couldn’t answer him. Like he said, these people are just jerks and how do you explain jerks?

He asked a lot of questions about the programme and wanted to know why they had to be so far away from home and why they couldn’t just live with or near their parents.

So is he just being lazy?

I explained about Hancock and his role and how complicated he seems to think it is to make this happen. Even my son, with his autism and LD, could smell something was off. “So he’s just being lazy then?” he asked. I nodded. “He doesn’t really care, does he?” he said, “It doesn’t look that way” I replied.

I explained that he will probably just ask for yet more reports – which looks as if he is doing something but in fact means he is doing nothing.

But why?

“Why does he need a report to know it’s just rubbish and they are just jerks? I can tell him that children need to be near home and I’m just a kid.”

Again, I had no answer.

A snap shot from my son's EHC Plan, where they asked about what a bad day at home would look like and he replied "I honestly don't think I would have a bad day at home"
And this says it all.

Not Complicated

Let’s be honest, it’s #notcomplicated at all. When a 14 year old boy with ASD and LD can see this, then why does Mr Hancock fail to?

Check out the link above to the hashtag on twitter and share your images and videos of how #notcomplicated it is for our children and young people to have good lives in their local community.

This is not new news.

Alicia Wood has written a great post about all the past reports and investigations. Frankly, more reports and reviews are just box ticking exercises, we don’t need them and we definitely don’t want them! They are just words on a page.

Words mean nothing

What can you do?

The families behind Rightful Lives have come up with a simple 8 point plan. Start sharing it.

8 point plan to get people out of ATUs and stop more people going in.
8 point plan from @rightfullives

Send it to your friends, family and colleagues on social media.

Send it to your MP and ask them what they are doing to ensure that their constituents with any disability are being cared for in their local community – and ask them not to send the template letter. (MPs appear to have a letter writing company who provides them with template responses to difficult questions. This was something that became apparent during the Justice for LB campaign when many of us wrote to our MPs and many of us received exactly the same response – word for word – except for the signatures)!

Get behind #HumanToo campaign – “Autistic people and people with a learning disability are #HumanToo. They deserve ordinary lives & homes not hospitals. Use the hashtag to share the message.”

SEND Crisis

One of the recurring comments we hear from our amazing Stronger Together families is how it all started to go wrong in education and it never got back on track after that.

Funding needs to be provided and quickly, so that the SEND Crisis in Education does not inevitably lead to so many more of our children ending up in these institutions.

We talked about when schools are just sh*t a few weeks ago.

There is a national SEND Crisis march organised for 30 May. You can find the details of your local march here. As they rightly say “it’s time we all united and stood up to the powers that refuse to provide our young people with the education that is rightfully theirs! “

Parent Blaming

This has to stop. Sadly it’s not just from those in power, it’s also from other parents. Think before you tweet. When you say “how can these parents be so calm” or “I would never let this happen to my child” – what you are saying to these parents is “you are somehow to blame”.

You probably don’t mean it but put yourself in their shoes and think how those types of comments could be interpreted when you are at your absolute lowest.

Please don’t help to perpetuate the myth that this is anything other than a systemic failure. The parents did nothing wrong except ask for help.

Find out more

Reports:

This week, several reports made the news.

CQC – Interim report: Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability and or autism

LeDeR report – LeDeR 2018 annual report indicates ongoing concerns over deaths

Children’s Commissioner – Who are they? Where are they? report

You can also read reports we have produced with our Stronger Together families

Chris Hatton’s The Great Disdain

Listen to families with lived experience

This week, several parents with lived experience of their child or young person being in one of these institutions have been talking to the media.

The Today show

Jeremy Vine show

Radio 4 – You and Yours

Sky news

There were many many more, please feel free to send us links so we can add them to the post.

Read Responses

CQC’s response to Panorama

Norman Lamb MP – Urgent Question (he raised the question at 11.30am and the discussion lasts for 30 minutes – be prepared for lots of “warm words”)

Cygnet do not appear to have put out a response (I may be wrong) but two things stood out on their website.

1) Whorlton Hall is no longer on their site. Searches take you to “no results found for your search” page. As if it never existed or happened.

2) You’ll be delighted to hear they have launched Mental Health First Aid training for their staff. “At Cygnet we understand that the mental health and wellbeing of our staff is just as important as the support we provide for our service users.”

NHS England also do not appear to have put out a response – again, I may be wrong but if they have it’s not very obvious.

UK Parliament Human Rights Committee response

Final Words

Mr Hancock’s department don’t appear to have put out a response.

He apparently couldn’t make it to the Chamber for Norman’s urgent question – his absence spoke volumes.

It would appear his focus is getting those Brexit votes today.

What a joy it was, this morning, to read “Don’t forget that only one party can deliver Brexit” but absolutely no reference to the “total jerks” we had seen on our screens last night.

Seriously Matt, if you cannot deliver on a promise made 8 years ago to just 3000 families on something everyone appears to agree on, then what hope are we supposed to have of you delivering Brexit?

Shall we write you a report on why we think this maybe is #toocomplicated ?

If I was in charge of OFSTED (Friday Questions)

Every Friday, we ask a random question on our Instagram and Facebook pages.

These are often generated by questions we get asked regularly or have been asked that week.

The idea is to bring together people’s knowledge and ideas and share them with everyone.

If you missed the post on social media, feel free to add your comment on this post.


Friday Question - in charge of ofsted

OFSTED

If you were in charge of Ofsted for a week, what questions would you ask schools about their SEND provision?

This was a popular question so we have summarised the responses as many asked the same question.

  • How many children have you asked to stay at home today as our visit would have been “too much for them”?
  • How many children have you arranged to take on a surprise school trip today?
  • Let’s look at all your B, C, D, I coded pupils etc and check with the parents they think the same as you, eg that they are off ill, or are actually being educated elsewhere.

 

  • How many children with SEND have left your school since our last visit?
  • How many children with SEND have left your school since our last visit as the parents believed you were not meeting their needs?

 

  • How do you ensure true inclusion?
  • Do all children with SEND take part in activities outside the school – field trips, residentials, etc – without their parent having to attend?

 

  • Can I speak to any parent with a child with SEND in your school, could I randomly select one?
  • How much notice do you take of parents input?  
  • How do you involve the parents?
  • Do you have any restrictions on communications with the school for parents?

 

  • Can I observe your children with SEND for a while and see evidence of how they are supported?
  • Can I see their support plans before I observe them?

 

  • Can I meet your SENCO without management being present?
  • Is your SENCO actually qualified as a SENCO or is it someone else in the management team with the qualifications who oversees them?
  • Can I meet the Governor who has overall responsibility for SEND

 

  • How are you assessing a child’s SEN?
  • How are you evaluating if you are meeting their needs?

 

  • Do you actually have any SEND provision?

 

  • What is your biggest challenge in meeting the needs of and including children with SEND?
  • What would help you to meet the needs of and include children with SEND?

 

What questions would you ask that haven’t already been asked above?


Friday Questions

Don’t forget to follow us on Facebook or over on Instagram so you can add your responses to future questions.

 

Relationships between families, providers and commissioners [2]

At our third Stronger Together event, we brought together families and providers, along with some colleagues from NHS England to look at what makes a difference and what can we do now.  It wasn’t about changes in legislation, it was about transforming the way we work and working with what we have.

Let’s be honest, legislation without true accountability is as useful as an ashtray on a motorcycle.

In our recent post, we talked about what the families and providers had to say about when relationships work between families, providers and commissioners.  However, in order to be realistic, we also have to talk about when relationships don’t work.

When it didn’t go well.

General:

  • When staff and home is 300 miles away, transition is difficult.
  • Hospital don’t like home staff being allowed in unit so no way for young person or family to get to work together before discharge.
  • No communication with the other Borough’s teams
  • Young person was seen as a diagnosis, not as an individual
  • Family were seen as the problem
  • Family did not get to share their vast knowledge or insight into what helps, works and doesn’t for their child or young person
  • Autism seen as a mental health issue
  • Not enough understanding of behaviour being a symptom

Parent carer feeling alone, stressed and like a failure

Providers:

  • The families did not get any chance to know the day staff, the night staff or the community staff
  • Communication between the staff, the provider and the families was virtually non existent.
  • Home staff had different training from the community staff and from the hospital staff
  • No clarity on who was responsible for what
  • No one took responsibility, it was always passed on to someone else who passed it on quickly to another person
  • Restraint training not available for home staff

Commissioners:

  • Looking for “spare bed” rather than bed in most suitable placement
  • Planning time not taken into consideration.
  • Staff turnover a huge issue due to limited funds being made available
  • Felt as if commissioner preferred the hospital setting as this came out of a different person/dept’s budget.

I kept thinking of the quote “Fail to plan, plan to fail” but felt as if I was the only person worried about this.

 

How did this feel?

In our post about when it went well, we also looked at the impact of this on the parent carer’s health.

We asked parents and providers how it felt when it went wrong.

When the system goes wrong, how does it feel

 

As you can see, the words “helpless”, “panic” and “isolated”/”alone” stand out.  When people feel frightened, stressed and anxious, the negative impact on their health, both mentally and physically, is immense.  As the results of our parent carer health survey show, there is often very little, if any, support or practical help and we often are not in a place, mentally or physically, to go searching for what support there is.

However, as our recent post showed, when things go well – often down to relationships, communication and good planning, things change.  Everyone feels better in themselves, relationships thrive and the ultimate goal of staying out becomes a real possibility for our child, young person or adult.


Coming soon:

Don’t miss out on this series of posts from our Stronger Together event.  Remember to subscribe for updates directly into your inbox.

Coming soon are posts on what questions parent carers need to ask providers, what questions providers need to ask parent carers, what do we actually want for our children and what can we do now to make transforming care a reality?


Thanks to:

With huge thanks to Avenues, Certitude, Choice Support, Dimensions, Look Ahead, MacIntryre and United Response for sponsoring this event and making it possible to bring everyone together.

 

Relationships between families, providers and commissioners [1]

At our third Stronger Together event earlier this month, we brought together families who have experience of a child being in an Assessment & Treatment Unit (ATU) and Providers who work in the local communities.

As always, the event was well attended, many familiies having attended our previous two events.  We also invited some colleagues from NHS England, who had attended our second event.

This was the first time though that we had invited Providers along to the event.  Very often Providers and Families become a Them and Us relationship which helps no one.   We wanted to bring together the two groups so they could learn from each other and hopefully take something forward from the weekend.

Thank you for creating the safe space for us all to connect. I haven’t experienced this anywhere else.

It was interesting to hear from both the Providers and the families about their perspective of when things don’t work out.  It was also a great opportunity to hear from those who had more positive experiences (yes, there are  some out there) and finding out what they thought had helped the transition and relationship work well.

When it went well:

The impact on a parent’s mental and physical health when things went well were obvious.  So often, the parent’s health is the last thing we all consider but as our report on Parent Carer Health – The Impact of the Caring Role shows, it should be something everyone considers when they are working with a family.

We asked families and providers to tell us in one word how it felt when things went well.

When things go well - graphic

As you can see, the words “valued”, “respected” and “happy” were words used by the majorty of people.  When people, especially parent carers, feel valued, respected and happy, their mental and physical health improves.  The benefits are immense, not just to the individual but to their family and to those working with their family.  Feeling valued and happy makes for much less confrontational relationships, this means that working together to reach the same goal is less of a challenge to all concerned.

We next asked them what happened?  Why did it work well?

What did everyone do?:

  • The family members were not seen as a difficult family, they were trusted to be part of the team with the same end goal.
  • Family were seen as part of the solution, not part of the problem
  • It felt like a true relationship
  • Empathy
  • There was an excellent united front
  • It was open consistent and trustful
  • Family were listened to.
  • The child or young person was seen as an individual
  • We worked together
  • Honesty
  • Good information and good communication
  • It felt like the current manager, the psychiatrist, the young person, the advocate and the family member were all a team
  • The fear of the parent that the child would go back was acknowledged (and not dismissed as negative thinking)
  • We worked on keeping everyone strong
  • We pulled together and still make time to pull together
  • Staying out was the goal everyone was aiming for
  • Relationships worked
  • Young person was in control at the start
  • Having the information to make choices
  • Well networked families who know the system
  • As a team realising we all have the same goal we were just coming from different places

As you can see, working together was what made the difference.  Having honest conversations and as one parent said

“they never said they would do something until they knew they could”.  

Families, providers and everyone involved had the chance to share relevant information and communication was consistent.

“If you rang someone, they rang you back – even if it was with bad news”

 

What did the Providers do?:

  • Provider listened to my son
  • The providers were honest and open about what they could do
  • Some providers went above and beyond with their training
  • Guidelines were set on what providers could and couldn’t do
  • Families were involved in recruitment and employment
  • Information from people and families already supported by the provider were provided
  • Staff lived nearby
  • We Skyped with the staff to get to know them
  • The day-to-day manager was committed
  • The provider took responsibility
  • Continuity from the providers
  • Flexible creative and fun support staff who appreciated the person they were supporting
  • Matching the support carefully was a priority looking at the who connects with who
  • Staff going the extra mile because, as they said, they couldn’t imagine being in our position
  • Consistency in the team and training
  • Knowing the person and liking the person
  • Planning times of crisis
  • Seen as an individual even if sharing accommodation
  • The strong leadership
  • Valuing the staff, the team and the family
  • Good assessment do and review process
  • Good support to develop skills
  • Structured care to build skills
  • Withdrawing support slowly as independent skills increase
  • Staff very well trained
  • Support that was discreet and invisible
  • Good provider able to go out into the community without booking appointments.

This was all about the training they provided, the location of staff, the relationships starting before discharge, being flexible, creative and great planning.  Most importantly, it was seeing the person as an individual and planning for when/if things went wrong before they did.

Acknowledging that things can and do go wrong is so important to the process.  

If we try to work with an “it won’t happen here” attitude, we’re not prepared when it does and this is when everything goes wrong and we end up with re-admission to the ATU or hospital.

 

See me as the solution not the problem

What did the Commissioner do?:

  • The Commissioner cared
  • Commissioners agreed to care team going and staying in the hospital
  • At times it was double funded but it kept her alive
  • Recognised that early intervention and continuity was essential
  • Transition funding suited the individual
  • The home suited the individual, we did not just fill a gap the area had.

How was the process different?

  • There was a real plan on management for safety
  • The necessary people were involved – not always clinical and sometimes independent
  • There was a good transition, long and staggered, with some core staff
  • There was a very good transition plan – we used a photo story
  • Moving out was one step at a time
  • Ups and downs were discussed
  • A crisis plan for provider person and community team is available
  • Planning from experience and learning from the previous provider
  • We thought about what could go wrong and how to manage it
  • We had the conversations about what could go wrong before the discharge
  • It was a proactive transition
  • Not giving up when there is an issue
  • Having community professionals back up
  • Planning time very very important
  • It was Person centred
  • Person Centred Practice
  • It was a person centred – not a business case based on a pen picture
  • Positive approaches
  • A “can do” attitude
  • Fully recognising the persons needs
  • Admitting we don’t always get it right. Honesty is key
  • Advocacy for the family was available
  • Support team worked closely together

Good planning, the time to plan and acknowledging that the discharge is just step one, not the end goal were key to staying out.

If your child has been in a unit for years, they can’t be expected to settle overnight into a new setting.  It’s like dieting – eating badly for five years is never going to be repaired by a one week eating plan.

Most of the things that made it work for everyone didn’t come at a financial cost, obviously some did.  However, there were 6 key themes:

  1. Good Communication
  2. Working Together
  3. All working towards the same goal of staying out
  4. Seeing the person as an individual.
  5. Appropriate training
  6. Good planning

Stronger Together

Make sure you don’t miss out on this series of posts.   Sign up for updates.

We will also be covering why it goes wrong, how does that feel, what families actually want for their children, what questions providers need to be asking families, what questions families need to be asking providers and what can we do now to make it better?


Thanks to

With huge thanks to Avenues, Certitude, Choice Support, Dimensions, Look Ahead, MacIntryre and United Response for sponsoring this event and making it possible to bring everyone together.

 

BAPS of the Month – February winner

In January, 2018 we launched a new award.  The BAPS of the Month Award.  For those who don’t already know:

BAPS = Bl**dy Awesome ParentS.

We had some really lovely nominations.  All of them deserved to be winners.

However, we had the task of choosing just one.

BUT BAPS of the MonthBAPS of the Month – February

Our winner is the lovely Gemma Birks.

Here are some of the comments people had about her.

Gemma is the light in a very dark tunnel in Stoke.
She has changed attitudes within the local authority and parents, helping both of them to see how working together is the best for our children.
I hit crisis 4 years ago and this woman stayed on the phone with me for 6 hours while I sat in a cold bath sobbing my heart out
She always makes time for parents and if she can attend a meeting for support she is there.
Gemma is Stoke’s go to parent
Gemma helped to set up PEGIS, which now supports over 700 families within Stoke.
Gemma bridges the gap between parents and the LA without ever forgetting she is there to represent families.
Gemma is selfless, caring, understanding and also very productive.
As you can see, choosing Gemma was an easy option for us this month.  In fact, some of us are now considering moving to Stoke.

What does our BAPS of the month win?

Gemma, you are truly worthy of being our BAPS of the Month for February.
BAPS of the Month Sponsors - January
We will be in touch because as well as people telling you how much they appreciate you (which is always lovely), you have also won £20 Amazon voucher (courtesy of Choice Support) and also a year’s subscription to My Life Raft (along with a one to one telephone coaching session from their team to help you get to grips with how it works).

BAPS of the Month – March

So who do you think deserves to be our March BAPS of the Month?
Click here to go to our nomination form – takes two minutes to complete.  Let someone know how much you appreciate or admire what they do.