Let's talk

NHS England is very clear that patients should be included and involved in every aspect of their care. So why isn't that happening?

We hear that some councils and commissioners aren't informing people about meetings, panel decisions or responding to requests to appeal. That they're using the Coronavirus Act 2020 to reduce and restrict care and support but not being transparent about what phase they are in with regard to easements.

We're getting reports that people are being discharged from community services without review or even a discussion.

People being presented with outcomes of reviews and decisions as 'done deals' with their only form of redress a complaint.


We're told that some have been 'advised' that a complaint or an appeal can take "up to 6 months" and that their "care package might be frozen during the investigations".

To read what people are saying to us click here


This is not what the NHS Constitution and the Care Act 2014 says should happen click here


Also very worrying, is the change in how people are responded to. Particularly those who have to ask questions or complain more than once. There has been a significant increase in the use of vexation orders.

Vexation orders can be used by the NHS and local authorities to limit and restrict contact with a person they consider to be 'unreasonable' or 'abusive'. Our investigations into some of the cases where vexation orders have been put in place or threatened, reveals that there are no grounds and the vexatious behaviour amounts to little more than confused and frightened people who don't understand why things are taking too long or simply not happening. We believe that compassion, consistency and clear explanation would prevent many of the alleged incidents happening at all.

NHS or Social Services speak is not helpful when a person is worried or at their wits end. Patronising people is never helpful or polite. Not allowing a person to question why procedures haven't been followed should not be met with indifference or dismissal. Expecting sick and disabled people to respond as an able bodied person might is not professional or fair. Actually all of this is against the rules and the Care Act 2014.


We're contacting councils, the NHS and CCGs to ask them to communicate better and stop making it so difficult for people to get information, be included and have a right to reply.

We want them to :

  • not threaten people with harassment or vexation orders or suggest that this might be an option unless they have evidence that this is true and necessary

  • not use language that is confusing or too technical for people to understand

  • accept that anxious, frightened, exhausted people do not complain without good reason and that if they repeatedly complain then it's time to take things seriously and review the complaint independently 

  • realise that disabled people and those with learning difficulties may need support to understand what is being said and to communicate their wishes and responses

  • appreciate that people will work with them if they are treated with care and respect

We recognise that professionals have a job to do, these are difficult times and also that some people do not accept the limitations of money and resources.

We know that some struggle to navigate systems and processes but we believe it is the job of the professionals to explain, support and guide.

We work best together when we all understand what is being done, asked and expected of us. None of us respond well to being ignored, dismissed or intimidated.

Please contact us if you have experience of poor service from NHS or local authority professionals including complaints teams Get in touch here

To read what people are saying to us click here

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