P-05-1045 To make shared-decision making and monthly mental health care-plan reviews a legal requirement, Correspondence – Petitioner to Committee, 30.01.21
To the Petitions Committee.
Before our petition is discussed with the panel, we wish to send further notes for you to consider based from the information you have sent and letter from Eluned Morgan on the 12th Jan 2021.
Please note – we will refer to Bronwen in this information as this is the strive behind us fighting for this change. We are aware you as a committee are unable to discuss specific cases especially with a current investigation underway. Please know we are using her name to give you specific example of where we have first handedly experienced these failures.
We are aware of the current guidelines being “Care plans should be reviewed based on clinical need, at a minimum of every six months”. We need you to know that this is not fit for purpose anymore. We cannot rely on a responsible clinician to make this informed decision based on “clinical need” to review the care-plan as it is simply not happening. Whether this be because the clinicians are too overworked or capacity is too small, the outcome is the same – it is not happening. From our experience (and sadly many others whom we have spoken with), we begged and begged clinicians to review Bronwen’s care-plan as the current plan was not helping and in-fact was exaggerating Bronwen’s difficulties. We were not listened to and we were told time and time again that the current form of treatment was what was “recommended” and that it essentially was the “way to go”, even though Bronwen and ourselves expressed deep concerns around this – it was never taken into consideration.
We truly believe that if Bronwen was listened to and was given the chance to have her family involved in her care-plan and her own thoughts and feelings about her care were taken into account, she would still be here today fighting to get better. Unfortunately, that is not the case, Bronwen was left to feel completely hopeless, no matter what happened and how much the family tried to be involved (including using “nearest relative” we were told the outcome to her care would ultimately be the same. Please take a moment to imagine or think how a vulnerable person could possibly envisage themselves getting better when they are significantly declining and NOTHING is being changed to support this decline. In-fact, her care team actually made serious decisions without even asking Bronwen or the family. For just a few examples:
· Took Bronwen’s CPN away from her.
· Asked the university to pull away support from Bronwen.
· Asked the GP services to pull away support from Bronwen.
· Asked the police to arrest Bronwen instead of sectioning her.
ALL of these decisions (and many others) were made without Bronwen’s consent, without her even being aware they were considering these options, without the family being made aware of ANYTHING and most importantly without ever considering Bronwen’s thoughts or feelings regarding the decisions. She was simply told that these changes had been made.
This, as you can imagine left her feeling helpless, hopeless and at rock bottom. I hope by now you can see how much this system needs to change.
The Solution:
This is how I vision things changing for the better:
Care-Plan reviews to be offered monthly as a LEGAL REQUIRMENT.
This would give the patient the option to refuse the review if they are satisfied with their current treatment however would leave space for discussions to occur with clinicians if they are needed. This would mean that for those who are receiving the care they feel is appropriate, there is scope for the review to be postponed – however the offer of the review still needs to be offered as a legal requirement. Please see template Care Plan review as example of how this could occur.
From this example you can see how simple it could be. Care providers will be meeting with their patients on a monthly basis anyway and all they have to do would have paperwork similar to this which would give the patient the option to sign that they are happy with their care or if they wish to have a review. This gives patients autonomy and would help build a trusting relationship and help the patient know that they have a say in the care they receive.
I would also like to draw your attention to the “Shared-decision making” aspect of this petition. What I mean by this is having a whole person approach whereby the individual is given the option to (if they consent) for their family to sign whether they are also satisfied with the individuals care. Please see below and example of how this could be represented.
From this template/example form – I hope it is clear to you, what we would like to achieve. It should be the individual’s personal choice whether they wish to have a review on their care based on how satisfied they are and it should be a legal requirement for them to also offer to consent to family being involved in this also.
We truly believe that if this change was implemented, patients will feel more ‘in control’ of their care and subsequently their life. This will promote autonomy and help to build those crucial relationships with their care-providers.
Please see link attached (to document and email) - Copy of the Change.org petition which received a total of 5092 signatures.
We urge you to consider reading the further information on this petition and consider the signatures here as well as the signatures on the Senedd petition.
Thank you from the bottom of our hearts for considering this petition. We deeply hope that you take our points into consideration and see the change that is so desperately needed.
Best wishes
Tesni & The Morgan Family.